The DUX-25 after Twenty-Five Years: New Analyses and Reference Data.

Twenty-five years after its inception, we present new analyses and reference data for the DUX-25, a questionnaire on health-related quality of life for children 8-17 years old and their parents as proxy. Data from 774 healthy children and their caregivers were collected through web-based data collection. Participants were recruited via primary and secondary schools in the Netherlands. The DUX-25 showed adequate psychometric qualities. Using exploratory and confirmatory factor analyses, we were able to support the theorized four-factor model. In addition, a model with five factors emerged in which the factor 'Social' was divided into 'Social Close' and 'Social Far'. A comparison of the outcomes of the PedsQL with those of the DUX-25 provides evidence for a high construct validity of the DUX-25. With the new updated reference data, the DUX-25 can still be used in inpatient and outpatient settings to measure health-related quality of life of children with chronic conditions.

Sex differences in children's health status as measured by the Pediatric Quality of Life Inventory (PedsQL)™: cross-sectional findings from a large school-based sample in the Netherlands.

BACKGROUND: Previous research has shown that female adolescents and adults report lower health status than their male peers. Possibly, this discrepancy already develops during childhood. We collected sex-specific data with the Pediatric Quality of Life Inventory (PedsQL) in a large school-based sample. METHODS: The online version of the PedsQL was administered to healthy Dutch children aged 5-7 years (parent proxy-report), 8-12 years (parent proxy-report and child self-report), and 13-17 years (parent proxy-report and child self-report), recruited through regular primary and secondary schools. Sex differences were assessed using t-tests or Mann-Whitney U-tests. Wilcoxon signed-rank tests and intraclass correlation coefficients served to compare parent proxy-reports with child self-reports. Multivariable linear regression analyses were used to assess the associations of sex of the child, age, and parental educational level with PedsQL scores. RESULTS: Eight hundred eighty-two parents and five hundred eighty one children were recruited from 15 different schools in the Netherlands. Parents of 8-to-12-year-olds reported higher scores on School Functioning for girls than for boys (mean difference [MD]: 6.56, p < 0.001). Parents of 13-to-17-year-olds reported lower scores on Physical and Emotional Functioning for girls than for boys (MDs: 2.14 and 5.79, p = 0.014 and p < 0.001, respectively). Girls aged 8-12 years reported lower scores than boys in this age group on Physical Functioning (MD: 3.09, p = 0.005). Girls aged 13-17 years reported lower scores than boys in this age group on Physical Functioning (MD: 3.67, p < 0.001), Emotional Functioning (MD: 8.11, p < 0.001), and the Total Score (MD 3.26, p = 0.004). No sex differences were found in children aged 5-7 years. Agreement between child self-reports and parent proxy-reports was poor to moderate. CONCLUSIONS: Girls generally had lower PedsQL scores than boys, both in parent proxy-reports and in child self-reports. We recommend to apply sex-specific data when assessing health status using the PedsQL.

The presentation of a short adapted questionnaire to measure asthma knowledge of parents.

BACKGROUND: The aim of this study is to establish asthma knowledge of parents of children (0-18 years) with asthma at the outpatient clinic. METHODS: A translated and adapted a 21 item Likert type 5 point scale questionnaire (Cronbach's α-coefficient 0.73) was completed by 291 parents of children with asthma. Total asthma knowledge scores were associated with demographic and psychosocial variables. RESULTS: Factor analysis resulted in a new reduced 10 item questionnaire (Cronbach's α-coefficient 0.72). Higher educational level of parents was associated with better asthma knowledge (p < 0.008 and p < 0.003). Parents showed more knowledge (p < 0.001) on non-medication questions. Asthma knowledge of the parent did not correlate with child age, gender, duration of airway problems, time since diagnosis or severity of asthma. CONCLUSIONS: Education of parents concerning the working mechanism, indications and use of asthma medications are an essential part of asthma education. Asthma education should be repeated frequently to parents of children with long-term airway problems or diagnosed asthma. Special attention must be paid to parents with only high school education or less.

Long-Term Neurodevelopmental Outcome in Survivors of Twin-to-Twin Transfusion Syndrome.

Twin-twin transfusion syndrome (TTTS) is a severe complication of monochorionic (MC) twin pregnancies associated with high perinatal mortality and morbidity rates. Management in TTTS is a major challenge for obstetricians and neonatologists. Twins with TTTS are often born prematurely after an extremely distressing and highly hazardous fetal period. Follow-up studies report varying rates of cerebral palsy (CP) and long-term neurodevelopmental impairment (NDI). This review discusses the latest findings on the long-term outcome of TTTS survivors, possible risk factors for long-term impairment, and provides recommendations for future research.

Neurodevelopmental outcome at 2 years in twin-twin transfusion syndrome survivors randomized for the Solomon trial.

BACKGROUND: The preferred treatment for twin-twin transfusion syndrome is fetoscopic laser coagulation of inter-twin vascular anastomoses on the monochorionic placenta. Severe postoperative complications can occur when inter-twin vascular anastomoses remain patent including twin-anemia polycythemia sequence or recurrent twin-twin transfusion syndrome. To minimize the occurrence of residual anastomoses, a modified laser surgery technique, the Solomon technique, was developed in which the entire vascular equator is coagulated. In the Solomon randomized controlled trial (NTR1245), the Solomon technique was associated with a significant reduction in twin-anemia polycythemia sequence and recurrence of twin-twin transfusion syndrome when compared with the standard laser surgery technique. Although a significant improvement in perinatal outcome was shown after the Solomon technique, the clinical importance should also be ascertained with long-term follow-up evaluation of the surviving children. OBJECTIVE: The purpose of this study was to compare the long-term neurodevelopmental outcome in surviving children with twin-twin transfusion syndrome who were included in the Solomon randomized trial and treated with either the Solomon technique or standard laser surgery technique. STUDY DESIGN: Routine standardized follow-up evaluation in survivors, at least 2 years after the estimated date of delivery, was performed at 2 of the 5 centers that participated in the Solomon trial: Buzzi Hospital Milan (Italy) and Leiden University Medical Center (The Netherlands). The primary outcome of this follow-up study was survival without long-term neurodevelopmental impairment at age 2 years. Neurodevelopmental impairment was defined as cerebral palsy, cognitive and/or motor development score of <85, bilateral blindness, or deafness. Cognitive and motor development was evaluated with the use of Bayley-III. All analyses per fetus, neonate, or child were conducted with the generalized estimated equation module to account for the effect that observations between co-twins are not independent. RESULTS: The primary outcome (survival without neurodevelopmental impairment) was detected in 95 of 141 cases (67%) in the Solomon group and in 99 of 146 cases (68%) in the standard group (P = .92). Neurodevelopmental impairment in long-term survivors who were included for follow-up evaluation was detected in 12 of 107 cases (11%) in the Solomon and in 10 of 109 cases (9%) in the standard group (P = .61). Neurodevelopmental impairment was due to cerebral palsy in 1 case (1%; spastic unilateral) in the Solomon group and in 2 cases (2%; spastic unilateral and spastic bilateral) in the standard group (P = .58). Cognitive development <85 cases was detected in 2 of 105 children (2%) in the Solomon group and in 6 of 106 children (6%) in the standard group (P = .23). Motor development <85 occurred in 8 of 103 children (8%) in the Solomon group and 3 of 104 children (3%) in the standard group (P = .23). CONCLUSION: We found no difference in survival without neurodevelopmental impairment between the Solomon and standard laser techniques. In view of the reduction of short-term complications and the absence of increased adverse long-term effects, these data support the use of the Solomon technique in the treatment of twin-twin transfusion syndrome.

Higher perceived HRQoL in Moroccan children with asthma and their parents.

We explored the differences in the perceived HRQoL between children with asthma from Moroccan and Dutch descent and their parents. In total 33 children (aged 6-18 years) from Moroccan (16) and Dutch descent (17) and their parents participated. All children were currently under treatment in a general hospital in the Netherlands. Generic and asthma specific HRQoL were assessed (DUX-25, DISABKIDS, PAQLQ). Significant differences were found on the DUX-25 subscales physical, emotional and home functioning. Children and parents from Dutch descent reported a lower HRQoL. The findings of this study are contrary with previous research. Results can be explained by the individualistic-collectivistic dimension, socially desirability, language and the feeling of miscomprehension. If this explanation makes sense health care workers have to invest in a good relationship with especially immigrant children and their parents, so they will have enough confidence to talk more openly about their physical as well as their psycho-social complaints.

Health-Related Quality of Life and Behavioral Functioning after Intrauterine Transfusion for Alloimmune Anemia.

OBJECTIVE: To assess health-related quality of life (HRQOL) and behavioral functioning in children and adolescents treated before birth with intrauterine intravascular blood transfusion for alloimmune anemia. STUDY DESIGN: Cross-sectional cohort study conducted at the Dutch referral center for the management of fetal alloimmune anemia. Follow-up data were available for 285 children at a mean age of 10.5 years (range, 3-21.5 years) with a response rate for questionnaires of 97%. Child-, adolescent-, and parent-rated HRQOL was evaluated with The Netherlands Organization for Applied Scientific Research Child/Adult Quality of Life Questionnaire (TACQOL/TAAQOL). Parents reported on behavioral functioning with the Strengths and Difficulties Questionnaire. Scores were compared with Dutch norm data. RESULTS: Significantly lower scores were reported by parents of children 6-11 years of age compared with Dutch norms on 3 scales: cognitive functioning, social functioning, and positive emotions (P < .00, P = .02, and P = .04). In children aged 8-11 years only the cognitive functioning scale score was significantly lower compared with Dutch norms (P = .01). The children aged 12-15 years reported higher scores on the negative emotions scale (P = .02). When corrected for multiple testing, only the parent-rated cognitive functioning scale remained significant (P < .001). Regarding the HRQOL scores of adolescents aged ≥16 years, no differences were detected. Overall, behavioral difficulties were reported in 37/246 (15%) children aged 3-16 years, and were associated with maternal educational levels (P < .001). CONCLUSION: Parents reported lower scores on cognitive functioning in their children aged 6-11 years compared with norms. Behavioral difficulties were more prevalent than norms, and were associated with maternal educational level. Outcomes of children after intrauterine intravascular blood transfusion were quite good overall.

Improvement in neurodevelopmental outcome in survivors of twin-twin transfusion syndrome treated with laser surgery.

OBJECTIVE: To compare the incidence of neurodevelopmental impairment in surviving children from pregnancies with twin-twin transfusion syndrome (TTTS) treated with laser surgery between 2 time periods. STUDY DESIGN: We compared the neurodevelopmental outcome between the first consecutive cohort of TTTS pregnancies treated with laser surgery from 2000 to 2005, with a cohort treated between 2008 and 2010. Neurologic, cognitive, and motor development was evaluated using Bayley scales at 2 years of age corrected for prematurity. RESULTS: A total of 229 twin pregnancies were treated with laser surgery, 113 in the first cohort and 106 in the recent cohort. Overall survival increased from 70% (158/226) to 80% (170/212) (P = .014). The incidence of neurodevelopmental impairment decreased from 18% (28/152) to 6% (10/155) (P < .01). In multivariate analysis, severe cerebral injury at birth was independently associated with neurodevelopmental impairment (odds ratio, 34.86; 95% confidence interval, 11.83-102.75; P < .01). CONCLUSION: Overall survival in TTTS has improved over time, with a concomitant reduction in the incidence of neurodevelopmental impairment. Research focused on prevention of cerebral injury is needed to further improve outcomes of these complicated twin pregnancies.

Cerebral injury and neurodevelopmental impairment after amnioreduction versus laser surgery in twin-twin transfusion syndrome: a systematic review and meta-analysis.

OBJECTIVE: To estimate the odds of severe cerebral injury and long-term neurodevelopmental impairment in monochorionic twins treated with amnioreduction versus laser surgery for twin-twin transfusion syndrome. METHODS: A systematic review and meta-analysis of studies on cerebral injury and long-term impairment after amnioreduction versus laser surgery were conducted. Odds ratios (OR) with their 95% confidence interval (CI) were computed. RESULTS: Electronic and manual search identified 63 references. Five studies were included for analysis. We found an ample seven-fold higher risk of severe cerebral injury in live-born children treated with amnioreduction compared to laser (OR 7.69, 95% CI 2.78-20.0, p = 0.00). In children surviving the neonatal period, the odds were three-times higher following amnioreduction (OR 3.23, 95% CI 1.45-7.14, p = 0.00). Although not significant, monochorionic twins treated with amnioreduction had higher odds of periventricular leukomalacia and intraventricular hemorrhage (OR 2.08, 95% CI 0.86-5.00, p = 0.10 and OR 3.56, 95% CI 0.82-14.29, p = 0.09). Unfortunately, there were insufficient long-term outcome data available to estimate the odds of neurodevelopmental impairment. CONCLUSION: Amnioreduction is associated with an increased risk of severe cerebral injury compared to laser surgery in twin-twin transfusion syndrome. Our study highlights a lack of studies focusing on long-term neurodevelopmental outcome. Follow-up into childhood is indispensable to determine outcome in terms of motor, cognitive and socioemotional development.

Translation and preliminary validation of the English version of the DUX questionnaire for lower extremity bone tumor patients (Bt-DUX): a disease-specific measure for quality of life.

PURPOSE: To translate the Dutch DUX questionnaire for lower extremity bone tumor patients (Bt-DUX), a disease-specific quality of life (QoL) instrument, into the English (UK) language and preliminary validate the English version in patients who were treated for lower-extremity bone tumors. METHODS: Adaptation and translation process included forward translation, back-translation, and a review of the back-translation by an expert committee. Internal consistency and validity of the translated questionnaire were examined in a sample of adolescents treated for lower extremity osteosarcoma in the United Kingdom. Assessments included the Bt-DUX, the Toronto Extremity Salvage Score (TESS), the Short Form (SF)-36, and the TNO-AZL Questionnaire for Adult's Quality of Life (TAAQOL). RESULTS: Seventeen patients (7 ♂ and 10 ♀), median age 19.9 (range: 16-25) years completed the questionnaires. Mean Bt-DUX score was 38.8 (range: 23-78), with Cronbach's α being 0.95 domain-total correlations ranged between 0.84 and 0.93 (P < 0.01). Spearman's correlation coefficients between the Bt-DUX total and domain scores and corresponding TAAQOL and SF-36 scores were overall moderate to good and reaching statistical significance in a most cases. CONCLUSION: Preliminary evidence suggests that the English Bt-DUX translation is a valid disease-specific instrument for evaluating QoL of adolescents with lower extremity bone cancer.

Evaluation of HIV and AIDS knowledge in rural Cameroon men with the use of a questionnaire.

INTRODUCTION: HIV/AIDS, the most important health problem in Africa, is the leading cause of death on the continent. Ignorance on HIV/AIDS status will hamper treatment and prevention. To investigate the level of HIV/AIDS knowledge among men in a rural area, we performed a questionnaire study on HIV/AIDS knowledge in men living in Banga Bakundu, a rural village in Cameroon. METHODS: Forty-eight men, aged 17-66 years, were interviewed. They were divided in 2 groups: ≤ 29 years, being those young enough to be able to have knowledge about HIV/AIDS at the time of their first sexual contact, and those > 29 years who weren't. A semi-structured clinical interview was performed to obtain information about socio-demographic characteristics, sexual activity, knowledge about HIV/AIDS and its prevention. RESULTS: There is an overall good HIV/AIDS knowledge and what should be done about it. Men with a higher level of education and more HIV/AIDS knowledge seem to take less preventive measures. The differentiation per age group showed that age influenced the data on knowledge and behaviour. CONCLUSION: Our data are consistent with other studies. Remarkable is the difference in HIV/AIDS knowledge between the 2 age groups, and the relation between HIV/AIDS knowledge and sexual habits and prevention. Sufficient HIV/AIDS knowledge did not lead to significant changes in sexual behaviour. The questionnaire showed to provide sufficient information and was easy to use. Further research should be performed.

The influence of patient reported outcomes on the discussion of psychosocial issues in children with cancer.

BACKGROUND: This study investigates the effect of using patient reported outcomes (PROs) about health-related quality of life (HRQOL) in clinical practice on the type and amount of psychosocial topics discussed during a paediatric oncology consultation. PROCEDURE: Children (N = 193) with cancer participated in a sequential cohort intervention study, with a control (no PRO was used) and intervention group (a PRO was used). For each child three consecutive consultations with the paediatric oncologist were audio recorded in order to assess the discussed psychosocial topics. One third of the audio recordings were qualitatively analysed. RESULTS: The type of the discussed psychosocial topics in the control and intervention group did not differ from each other. However, the discussion of psychosocial topics increased in the intervention group compared to the control group. In both groups, topics within the social domain occurred most frequently and topics regarding the emotional domain had the lowest incidence. CONCLUSIONS: PROs do not change the psychosocial content of communication. Paediatric oncologists already address psychosocial issues during the consultation, regardless of the use of a PRO. However, with a PRO available they address these issues more systematically and more often.

Reporting health-related quality of life scores to physicians during routine follow-up visits of pediatric oncology patients: is it effective?

BACKGROUND: The aim of the current study is to investigate the effectiveness of an intervention that provides health-related quality of life (HRQOL) scores of the patient (the QLIC-ON PROfile) to the pediatric oncologist. PROCEDURE: Children with cancer participated in a sequential cohort intervention study: intervention N = 94, control N = 99. Primary outcomes of effectiveness were communication about HRQOL domains (t-test, Mann-Whitney U-test) and identification of HRQOL problems (chi-squared test). Secondary outcomes were satisfaction (multilevel analysis), referrals (chi-squared test), and HRQOL (multilevel analysis). RESULTS: The QLIC-ON PROfile increased discussion of emotional functioning (control M = 32.9 vs. intervention M = 47.4, P < 0.05) and psychosocial functioning (M = 56.9 vs. M = 63.8, P < 0.05). Additionally more emotional problems remained unidentified in the control compared to the intervention group, for example, anger (control 26% vs. intervention 3%, P < 0.01), fear (14% vs. 0%, P < 0.01), and sadness (26% vs. 0%, P < 0.001). The intervention had no effect on satisfaction and referrals, but did improve HRQOL of patients 5-7 years of age with respect to self-esteem (P < 0.05), family activities (P < 0.05), and psychosocial functioning (P < 0.01). CONCLUSIONS: We conclude that a PRO is a helpful tool for systematic monitoring HRQOL of children with cancer, without lengthening the duration of the consultation. It is recommended to be implemented in clinical practice.

A prospective study on quality of life and functional outcome in children and adolescents after malignant bone tumor surgery.

BACKGROUND: Few longitudinal data are available concerning quality of life (QoL) and functioning of young patients undergoing surgical procedures for malignant bone tumors around the knee joint. Aim of the present study was to evaluate patients' quality of life, functional ability, and physical activity during a 2-year postoperative period. METHODS: This prospective study included patients who underwent surgery for a malignant bone tumor around the knee joint between 2004 and 2008. Assessments were done at 3, 6, 9, 12, 18, and 24 months after surgery. QoL was measured with the TNO-AZL Children's or Adult's Quality of Life Questionnaires (TACQOL and TAAQOL), the Short Form-36 (SF-36) and Bone tumor (Bt)-DUX; functional ability with the Toronto Extremity Salvage Scale (TESS), the 6-minute walk test (6 MWT) and four functional performance tests; and physical activity with the Baecke questionnaire and the ActiLog® activity monitor. Statistical analysis included linear mixed model analysis. RESULTS: Forty-four patients (27 males, 17 females, mean age 14.9 (SD 4.8) years) were included, 27 (61%) underwent limb-salvage and 17 (39%) ablative surgery. Twenty patients were lost during the 2 years follow-up as a consequence of oncological complications. Over the first year, survivors showed significant improvement of QoL, functional ability and physical activity, except for the mental dimension of the SF-36 and the activity monitor results. Over the second year, these improvements were less pronounced. CONCLUSIONS: In the first 2 years after bone tumor surgery, survivors improved significantly with respect to QoL, functional ability, and physical activity levels.

Quality of life, functional ability and physical activity after different surgical interventions for bone cancer of the leg: A systematic review.

PURPOSE: To systematically review published studies comparing Quality of Life (QoL), functional ability and/or physical activity between different surgical interventions due to a malignant bone tumour of the leg. METHODS: A systematic literature search, covering the years 2000-2010 was performed using the PubMed, Embase, Web of science and Cochrane databases. Studies were included if they described and statistically compared QoL, functional ability and/or physical activity of at least two surgical interventions for lower extremity bone cancer. In addition, the methodological quality of the selected studies was evaluated by using a 24-point scale. Where appropriate, a qualitative analysis or meta-analysis was performed. RESULTS: The search strategy resulted in a list of 246 citations. Based on titles and abstracts 50 full-text articles were selected, of which 13 articles describing 12 studies, were finally included. Overall, the methodological quality of the studies was moderate. Studies were heterogeneous with respect to their categorisation of surgical interventions, average age of patients and average duration of follow-up. Overall, results regarding differences between ablative and limb-sparing surgery varied largely. Meta-analysis was considered to be not appropriate due to clinical heterogeneity, methodological differences and flaws. CONCLUSION: Twelve studies comparing the outcomes of QoL, functional ability and physical activity between limb-sparing and ablative surgery groups were identified, with an overall moderate methodological quality. Their largely varying outcomes suggest that no general conclusions on the advantage of either limb-sparing or ablative surgery in patients with malignant bone tumours of the lower extremity can be drawn.

Long-term neurodevelopmental outcome in monochorionic twins after fetal therapy.

Monochorionic (MC) twins are at risk for several disorders, including twin-twin transfusion syndrome (TTTS), Twin Reverse Arterial Perfusion (TRAP) and selective intrauterine growth restriction (sIUGR). Several fetal interventions, such as serial amnioreduction (AR), fetoscopic laser coagulation of placental anastomoses (FLC) and selective feticide have lead to improved perinatal morbidity and mortality rates. Nevertheless, the rate of cerebral lesions in MC twins after fetal therapy appears to be high. Follow-up studies show a high incidence of cerebral palsy (CP) and neurodevelopmental impairment (NDI). We performed a systematic review on the long-term neurodevelopmental outcome in MC twins with TTTS following AR and FLC and MC twins following selective feticide of the co-twin due to TTTS, TRAP, sIUGR and congenital anomalies.

Long-term neurodevelopmental outcome after intrauterine transfusion for fetal anemia.

The long-term neurodevelopmental outcome of children born after intrauterine blood transfusion (IUT) for red cell alloimmunization is considered favorable. Severe hydrops has been identified as a strong predictor for neurodevelopmental impairment. However, the long-term outcome of survivors of IUT for congenital Parvovirus B19 infection and fetomaternal hemorrhage is not well known. Limitations of the follow-up studies to date are small sample size, lack of controls, unclear criteria for impairment and lack of standardized developmental tests. Future research should take into account more subtle impairments, since cognitive functioning <-1 SD, behavioral and learning problems already have a significant impact on care requirements and future socio-economic potential. A better understanding of the effect of IUT and fetal anemia on child development over time will allow more accurate parental counseling and targeted interventions to optimize child development when needed.

Functional ability and physical activity in children and young adults after limb-salvage or ablative surgery for lower extremity bone tumors.

BACKGROUND: Aim of our study was to compare functional ability and physical activity in children and young adults who underwent surgery for a malignant bone tumor that was located around the knee. METHODS: This cross-sectional study included 82 patients aged 8-25 years with a follow-up of 1-5 years. The functional ability and the amount of physical activity were evaluated by means of questionnaires and objective instruments. RESULTS: Thirty nine patients underwent limb-salvage surgery (24 allograft and 15 endoprosthesis) and 43 underwent ablative surgery (27 amputations and 16 rotationplasty). Patients in the limb-salvage group were significantly older at the time of surgery than patients in the ablative group (mean age 15.2 years vs. 13.2 years, P = 0.03). Apart from significantly better scores for the timed up and down stairs and various walking activities in the limb-salvage group as compared to the ablative surgery group, no significant differences were seen for any of the outcome measures. CONCLUSIONS: One to 5 years after limb-salvage and ablative surgery due to a malignant bone tumor children and young adults do, apart from a few activities involving walking and climbing stairs, not differ with respect to overall functional ability and physical activity.

Development and implementation of a patient reported outcome intervention (QLIC-ON PROfile) in clinical paediatric oncology practice.

OBJECTIVE: The use of patient reported outcomes (PRO) in routine clinical practice is becoming increasingly common, but there is limited knowledge about the development and implementation of PRO. The objective of the current paper is to provide a thorough description of the development and implementation of a PRO on health related quality of life (HRQOL)--the QLIC-ON PROfile--in clinical paediatric oncology practice. METHODS: The development of the QLIC-ON PROfile is explained by elucidating important choices: the HRQOL instrument, the professional that uses the QLIC-ON PROfile, the optimal form of HRQOL feedback and whether or not a clinically important difference is reported. The description of the implementation of the QLIC-ON PROfile focuses on the education and commitment of the professional that uses the QLIC-ON PROfile. Study design and outcome measures are also elaborated on. RESULTS: Important considerations regarding the development and implementation of PRO interventions are reported. These considerations have also resulted in educational material. CONCLUSION: Our study adds to current knowledge of PRO research. This paper can be used as a practical guide for researchers and other professionals, who are interested in setting up PRO interventions in any clinical setting.

Quality of life in young patients after bone tumor surgery around the knee joint and comparison with healthy controls.

BACKGROUND: This study aimed to compare the health related quality of life (HRQoL) of children and adolescents after malignant bone tumor surgery of the leg with healthy controls. PROCEDURE: Patients between 8 and 25 years old were cross-sectional recruited. Patients under 16 years of age received the TNO (Netherlands Organization for Applied Scientific Research) and AZL (Leiden University Medical Center) Children's Quality of Life Questionnaire (TACQOL), patients aged 16 years and older received the TNO-AZL Questionnaire for Adult's Quality of Life (TAAQOL) and the Short Form-36 (SF-36). Three age- and sex-matched normative random samples, drawn from large, nationwide studies, were used for the comparison with healthy controls. Patients were interviewed regarding their most important problems related to the disease and its treatment. RESULTS: Eighty-one patients with a mean age of 16.9 years (SD 4.2) were included (41 female). Limb sparing surgery was executed in 38 patients, ablative surgery in 43 patients. In comparison with healthy controls, patients had significantly poorer HRQoL within the domains autonomy and motor function of the TACQOL, gross motor function, cognitive functioning, daily functioning and sexuality of the TAAQOL, and physical functioning, role physical, general health, and the physical and mental component summary scales of the SF-36. Patients reported limitations in physical activities, participation in sports, and cosmetic aspects as the most detrimental consequences of their disease and its treatment. CONCLUSION: In children and adolescents who underwent surgery for a malignant tumor of the leg physical, functioning was significantly impaired as compared to healthy controls.