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Hedén, L., von Essen, L. & Ljungman, G. (2020). Children’s self-reports of fear and pain levels during needle procedures. Nursing Open, 7(1), 376-382
Open this publication in new window or tab >>Children’s self-reports of fear and pain levels during needle procedures
2020 (English)In: Nursing Open, E-ISSN 2054-1058, Vol. 7, no 1, p. 376-382Article in journal (Refereed) Published
Abstract [en]

Aim

The objective was to determine the levels of and potential relationships between, procedure‐related fear and pain in children.

Design

Clinical based cross‐sectional.

Methods

Ninety children aged between 7–18 years were included consecutively and self‐reported levels of pain and fear on a 0–100 mm visual analogue scales (VAS) when undergoing routine needle insertion into a subcutaneously implanted intravenous port following topical anaesthesia.

Results

The needle‐related fear level was reported to be as high as the needle‐related pain level (mean VAS: 14 mm and 12 mm, respectively, N = 90). With fear as the dependent variable, age and pain were significantly associated and explained 16% of the variance. With pain as the dependent variable, fear was significantly associated and explained 11% of the variance. A post hoc analysis indicated that younger children reported their fear levels to be higher than their pain levels.

Keywords
Cancer, children, fear, needle, nurses, pain, self-report
National Category
Clinical Medicine Cancer and Oncology Pediatrics
Research subject
Pediatrics; Psychology; Oncology
Identifiers
urn:nbn:se:uu:diva-399074 (URN)10.1002/nop2.399 (DOI)31871722 (PubMedID)
Funder
Swedish Childhood Cancer FoundationSwedish Cancer Society
Available from: 2019-12-12 Created: 2019-12-12 Last updated: 2020-01-31Bibliographically approved
Kamsvåg Magnusson, T., Svanberg, A., Garming Legert, K., Arvidson, J., von Essen, L., Mellgren, K., . . . Ljungman, G. (2020). Prevention of oral mucositis with cryotherapy in children undergoing hematopoietic stem cell transplantations: A feasibility study and randomized controlled trial feasibility study and randomized controlled trial. Supportive Care in Cancer
Open this publication in new window or tab >>Prevention of oral mucositis with cryotherapy in children undergoing hematopoietic stem cell transplantations: A feasibility study and randomized controlled trial feasibility study and randomized controlled trial
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2020 (English)In: Supportive Care in Cancer, ISSN 0941-4355, E-ISSN 1433-7339Article in journal (Refereed) Published
Abstract [en]

Purpose

To evaluate the feasibility of oral cryotherapy (OC) in children and to investigate if OC reduces the incidence of severe oral mucositis (OM), oral pain, and opioid use in children undergoing hematopoietic stem cell transplantation (HSCT).

Methods

Fifty-three children, 4–17 years old, scheduled for HSCT in Sweden were included and randomized to OC or control using a computer-generated list. OC instructions were to cool the mouth with ice for as long as possible during chemotherapy infusions with an intended time of ≥ 30 min. Feasibility criteria in the OC group were as follows: (1) compliance ≥ 70%; (2) considerable discomfort during OC < 20%; (3) no serious adverse events; and (4) ice administered to all children. Grade of OM and oral pain was recorded daily using the WHO-Oral Toxicity Scale (WHO-OTS), Children’s International Oral Mucositis Evaluation Scale, and Numerical Rating Scale. Use of opioids was collected from the medical records.

Results

Forty-nine children (mean age 10.5 years) were included in analysis (OC = 26, control = 23). The feasibility criteria were not met. Compliance was poor, especially for the younger children, and only 15 children (58%) used OC as instructed. Severe OM (WHO-OTS ≥ 3) was recorded in 26 children (OC = 15, control = 11). OC did not reduce the incidence of severe OM, oral pain, or opioid use.

Conclusion

The feasibility criteria were not met, and the RCT could not show that OC reduces the incidence of severe OM, oral pain, or opioid use in pediatric patients treated with a variety of conditioning regimens for HSCT.

Keywords
Oral mucositis, Children, Hematopoietic stem cell transplantation, Oral cryotherapy, Feasibility
National Category
Pediatrics Cancer and Oncology
Research subject
Pediatrics; Oncology
Identifiers
urn:nbn:se:uu:diva-404273 (URN)10.1007/s00520-019-05258-2 (DOI)
Funder
Swedish Childhood Cancer FoundationSwedish Cancer Society
Available from: 2020-02-17 Created: 2020-02-17 Last updated: 2020-02-18Bibliographically approved
Thorsell Cederberg, J., Weineland, S., Dahl, J. & Ljungman, G. (2019). A preliminary validation of the Swedish version of the Pain Catastrophizing Scale for Children (PCS-C) for children and adolescents with cancer. Journal of Pain Research, 12, 1803-1811
Open this publication in new window or tab >>A preliminary validation of the Swedish version of the Pain Catastrophizing Scale for Children (PCS-C) for children and adolescents with cancer
2019 (English)In: Journal of Pain Research, ISSN 1178-7090, E-ISSN 1178-7090, Vol. 12, p. 1803-1811Article in journal (Refereed) Published
Abstract [en]

Objectives: Pain is reported as one of the most common and difficult symptoms for children and adolescents with cancer to cope with. Pain catastrophizing has been identified as a process clearly related to pain intensity and disability. The Pain Catastrophizing Scale for Children (PCS-C) has been validated in several languages and populations but remains to be validated in pediatric oncology. The aim of the study was to validate a Swedish version of the PCS-C for children and adolescents with cancer.

Methods: All children, 7-18 years of age, being treated for cancer in Sweden at the time of the study were invited to participate. Study material was sent out to the registered address. Internal consistency, test-retest reliability and convergent validity were calculated. Factor structure was examined using principal component analysis (PCA). Descriptive statistics were used to investigate background data and norm values.

Results: 61 children/adolescents were included in the analyses. The results did not support the original three-factor structure of the PCS-C, but rather suggested that a two-factor structure excluding item 8 best represented the data. The internal consistency of that solution was good (alpha=0.87), the test-rest reliability was excellent (ICC=0.75) and convergent validity was demonstrated (r=0.46). The mean (SD) for the PCS-C in the sample was 19.1 (9.2), without item 8. A statistically significant difference was shown between genders, where girls reported a higher level of pain catastrophizing than boys. No difference was found with regard to age.

Discussion: The Swedish version of the PCS-C is now preliminarily validated for children and adolescents with cancer, for whom gender- and age-specific norm values are now available. Questions remain regarding the optimal factor structure of the PCS-C.

Place, publisher, year, edition, pages
DOVE MEDICAL PRESS LTD, 2019
Keywords
The Pain Catastrophizing Scale for Children, instrument validation, children, adolescents, cancer, pain
National Category
Pediatrics
Identifiers
urn:nbn:se:uu:diva-387979 (URN)10.2147/JPR.S191378 (DOI)000470661700002 ()
Funder
Swedish Childhood Cancer Foundation, PR2013-0058Swedish Cancer Society, CAN2013/749
Available from: 2019-06-27 Created: 2019-06-27 Last updated: 2019-06-27Bibliographically approved
Scheer, M., Vokuhl, C., Blank, B., Hallmen, E., von Kalle, T., Muenter, M., . . . Koscielniak, E. (2019). Desmoplastic small round cell tumors: Multimodality treatment and new risk factors. Cancer Medicine, 8(2), 527-542
Open this publication in new window or tab >>Desmoplastic small round cell tumors: Multimodality treatment and new risk factors
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2019 (English)In: Cancer Medicine, ISSN 2045-7634, E-ISSN 2045-7634, Vol. 8, no 2, p. 527-542Article in journal (Refereed) Published
Abstract [en]

Background: To evaluate optimal therapy and potential risk factors.

Methods: Data of DSRCT patients <40 years treated in prospective CWS trials 1997‐2015 were analyzed.

Results: Median age of 60 patients was 14.5 years. Male:female ratio was 4:1. Tumors were abdominal/retroperitoneal in 56/60 (93%). 6/60 (10%) presented with a localized mass, 16/60 (27%) regionally disseminated nodes, and 38/60 (63%) with extraperitoneal metastases. At diagnosis, 23/60 (38%) patients had effusions, 4/60 (7%) a thrombosis, and 37/54 (69%) elevated CRP. 40/60 (67%) patients underwent tumor resection, 21/60 (35%) macroscopically complete. 37/60 (62%) received chemotherapy according to CEVAIE (ifosfamide, vincristine, actinomycin D, carboplatin, epirubicin, etoposide), 15/60 (25%) VAIA (ifosfamide, vincristine, adriamycin, actinomycin D) and, 5/60 (8%) P6 (cyclophosphamide, doxorubicin, vincristine, ifosfamide, etoposide). Nine received high‐dose chemotherapy, 6 received regional hyperthermia, and 20 received radiotherapy. Among 25 patients achieving complete remission, 18 (72%) received metronomic therapies. Three‐year event‐free (EFS) and overall survival (OS) were 11% (±8 confidence interval [CI] 95%) and 30% (±12 CI 95%), respectively, for all patients and 26.7% (±18.0 CI 95%) and 56.9% (±20.4 CI 95%) for 25 patients achieving remission. Extra‐abdominal site, localized disease, no effusion or ascites only, absence of thrombosis, normal CRP, complete tumor resection, and chemotherapy with VAIA correlated with EFS in univariate analysis. In multivariate analysis, significant factors were no thrombosis and chemotherapy with VAIA. In patients achieving complete remission, metronomic therapy with cyclophosphamide/vinblastine correlated with prolonged time to relapse.

Conclusion: Pleural effusions, venous thrombosis, and CRP elevation were identified as potential risk factors. The VAIA scheme showed best outcome. Maintenance therapy should be investigated further.

Place, publisher, year, edition, pages
WILEY, 2019
Keywords
C-reactive protein, desmoplastic small round cell tumor, maintenance therapy, soft tissue sarcoma, Trousseau's syndrome
National Category
Cancer and Oncology
Identifiers
urn:nbn:se:uu:diva-378728 (URN)10.1002/cam4.1940 (DOI)000459306700006 ()30652419 (PubMedID)
Available from: 2019-03-08 Created: 2019-03-08 Last updated: 2019-03-08Bibliographically approved
Eccleston, C., Fisher, E., Cooper, T. E., Gregoire, M.-C., Heathcote, L. C., Krane, E., . . . Zernikow, B. (2019). Pharmacological interventions for chronic pain in children: an overview of systematic reviews. Pain, 160(8), 1698-1707
Open this publication in new window or tab >>Pharmacological interventions for chronic pain in children: an overview of systematic reviews
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2019 (English)In: Pain, ISSN 0304-3959, E-ISSN 1872-6623, Vol. 160, no 8, p. 1698-1707Article, review/survey (Refereed) Published
Abstract [en]

We know little about the safety or efficacy of pharmacological medicines for children and adolescents with chronic pain, despite their common use. Our aim was to conduct an overview review of systematic reviews of pharmacological interventions that purport to reduce pain in children with chronic noncancer pain (CNCP) or chronic cancer-related pain (CCRP). We searched the Cochrane Database of Systematic Reviews, Medline, EMBASE, and DARE for systematic reviews from inception to March 2018. We conducted reference and citation searches of included reviews. We included children (0-18 years of age) with CNCP or CCRP. We extracted the review characteristics and primary outcomes of >= 30% participant-reported pain relief and patient global impression of change. We sifted 704 abstracts and included 23 systematic reviews investigating children with CNCP or CCRP. Seven of those 23 reviews included 6 trials that involved children with CNCP. There were no randomised controlled trials in reviews relating to reducing pain in CCRP. We were unable to combine data in a meta-analysis. Overall, the quality of evidence was very low, and we have very little confidence in the effect estimates. The state of evidence of randomized controlled trials in this field is poor; we have no evidence from randomised controlled trials for pharmacological interventions in children with cancer-related pain, yet cannot deny individual children access to potential pain relief.

Keywords
Adolescents, Cancer-related pain, Children, Chronic pain, Pharmacological interventions, Systematic review
National Category
Pediatrics
Identifiers
urn:nbn:se:uu:diva-393762 (URN)10.1097/j.pain.0000000000001609 (DOI)000480764500005 ()31335640 (PubMedID)
Available from: 2019-09-27 Created: 2019-09-27 Last updated: 2019-09-27Bibliographically approved
Frygner-Holm, S., Russ, S., Quitmann, J., Ring, L., Zyga, O., Hansson, M. G., . . . Höglund, A. T. (2019). Pretend Play as an Intervention for Children With Cancer: A Feasibility Study. Journal of Pediatric Oncology Nursing, 37(1), 65-75
Open this publication in new window or tab >>Pretend Play as an Intervention for Children With Cancer: A Feasibility Study
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2019 (English)In: Journal of Pediatric Oncology Nursing, ISSN 1043-4542, E-ISSN 1532-8457, Vol. 37, no 1, p. 65-75Article in journal (Refereed) Published
Abstract [en]

Children with cancer suffer from symptoms and burdensome treatments that often cause distress to children and their families. Mortality is one aspect of cancer diagnosis, while another is the quality of life and well-being during and after the treatment. By supporting children's communication, self-efficacy and coping ability in the care situation, children are given the possibilities for increased independence and participation and are allowed to develop an influence over their care. The aim of this study was to develop and evaluate the feasibility and acceptability of an adult-facilitated pretend play intervention for children with cancer. Five children with ongoing treatment for cancer were invited to a play intervention that consisted of six to eight sessions of structured pretend play aimed at increasing participation, independence, and well-being. A mixed method design was used to evaluate the feasibility and acceptability of the play intervention. Measures were collected before and after interventions, and in conjunction with every play session. Results suggest that the children enjoyed the play intervention. Findings indicate small improvements regarding self-efficacy in care situations and equal or increased quality of life for participants. A main finding was that no adverse events or increased worrying was reported in conjunction with play sessions. Therefore, the intervention is regarded as safe, feasible, and acceptable as reported by participants and their primary caregivers and a possible means of increasing participation and independence in children with a cancer diagnosis.

Keywords
Intervention, pediatric oncology, pretend play, self-efficacy
National Category
Cancer and Oncology Pediatrics
Research subject
Oncology; Pediatrics; Psychology
Identifiers
urn:nbn:se:uu:diva-399071 (URN)10.1177/1043454219874695 (DOI)000498992800006 ()31540566 (PubMedID)
Funder
Swedish Childhood Cancer Foundation, PR2013-0123
Available from: 2019-12-12 Created: 2019-12-12 Last updated: 2020-01-08Bibliographically approved
Loeffen, E. A. H., Kremer, L. C. M., van de Wetering, M. D., Mulder, R. L., Font-Gonzalez, A., Dupuis, L. L., . . . Zeltzer, L. (2019). Reducing pain in children with cancer: Methodology for the development of a clinical practice guideline. Pediatric Blood & Cancer, 66(6), Article ID e27698.
Open this publication in new window or tab >>Reducing pain in children with cancer: Methodology for the development of a clinical practice guideline
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2019 (English)In: Pediatric Blood & Cancer, ISSN 1545-5009, E-ISSN 1545-5017, Vol. 66, no 6, article id e27698Article in journal (Refereed) Published
Abstract [en]

Although pain is one of the most prevalent and bothersome symptoms children with cancer experience, evidence-based guidance regarding assessment and management is lacking. With 44 international, multidisciplinary healthcare professionals and nine patient representatives, we aimed to develop a clinical practice guideline (following GRADE methodology), addressing assessment and pharmacological, psychological, and physical management of tumor-, treatment-, and procedure-related pain in children with cancer. In this paper, we present our thorough methodology for this development, including the challenges we faced and how we approached these. This lays the foundation for our clinical practice guideline, for which there is a high clinical demand.

Keywords
clinical practice guideline, evidence-based medicine, pain, pediatric oncology, supportive care
National Category
Cancer and Oncology Pediatrics
Identifiers
urn:nbn:se:uu:diva-383499 (URN)10.1002/pbc.27698 (DOI)000465150800067 ()30848078 (PubMedID)
Available from: 2019-05-17 Created: 2019-05-17 Last updated: 2019-05-17Bibliographically approved
Sparber-Sauer, M., Stegrnaier, S., Vokuhl, C., Seitz, G., von Kalle, T., Scheer, M., . . . Klingebiel, T. (2019). Rhabdomyosarcoma diagnosed in the first year of life: Localized, metastatic, and relapsed disease. Outcome data from five trials and one registry of the Cooperative Weichteilsarkom Studiengruppe (CWS). Pediatric Blood & Cancer, 66(6), Article ID e27652.
Open this publication in new window or tab >>Rhabdomyosarcoma diagnosed in the first year of life: Localized, metastatic, and relapsed disease. Outcome data from five trials and one registry of the Cooperative Weichteilsarkom Studiengruppe (CWS)
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2019 (English)In: Pediatric Blood & Cancer, ISSN 1545-5009, E-ISSN 1545-5017, Vol. 66, no 6, article id e27652Article in journal (Refereed) Published
Abstract [en]

Background

Rhabdomyosarcoma (RMS) diagnosed during the first year of life is reported to have poor outcome. Little is known about treatment and outcome data of relapsed disease (RD).

Methods

Characteristics, treatment, and outcome of 155 patients <= 12 months registered within the Cooperative Weichteilsarkom Studiengruppe (CWS) between 1981 and 2016 were evaluated.

Results

Localized disease (LD) was diagnosed in 144 patients and metastatic disease (MD) in 11. The histological diagnosis was alveolar (RMA) (n = 38, 23/25 examined patients PAX7/3:FOXO1-positive), embryonal (RME) (n = 100), botryoid (n = 10), anaplastic (n = 1), and spindle-cell RMS (n = 6). Multimodal treatment including conventional (age-adjusted) chemotherapy (CHT) (n = 150), resection (n = 137), and radiotherapy (RT) (n = 37) was administered. Complete remission was achieved in 129 of 144 patients with LD. RD occurred in 51 infants at a median age of 1.7 years (range, 0.3-8.8). Sixty-three percent of patients with RMA suffered RD, in contrast to 28% of patients with RME. Relapse treatment consisted of conventional CHT (n = 48), resection (n = 28), and RT (n = 21). The pattern of relapse and best resection were significant prognostic factors for patients with RD (P = 0.000 and P = 0.002). Late effects occurred as secondary malignancies in 6%, long-term toxicity in 21%, and resection-related impairment in 33% of the 105 surviving patients. The 5-year event-free survival and overall survival for infants with initial LD were 51% and 69%, 14% and 14% for patients with initial MD and 39% and 41% for relapsed patients, respectively.

Conclusion

Multimodal treatment including microscopically complete resection is strongly recommended to achieve a good prognosis in LD and RD of infants with RMS.

Keywords
CWS Group, infants, localized disease, metastatic disease, relapsed disease, rhabdomyosarcoma
National Category
Hematology Pediatrics
Identifiers
urn:nbn:se:uu:diva-383502 (URN)10.1002/pbc.27652 (DOI)000465150800058 ()30762282 (PubMedID)
Available from: 2019-05-17 Created: 2019-05-17 Last updated: 2019-05-17Bibliographically approved
Thorsell Cederberg, J., Weineland, S., Dahl, J. & Ljungman, G. (2019). Validation of the Swedish version of the Pain Catastrophizing Scale for Parents (PCS-P) for parents of children with cancer. Journal of Pain Research, 12, 1017-1023
Open this publication in new window or tab >>Validation of the Swedish version of the Pain Catastrophizing Scale for Parents (PCS-P) for parents of children with cancer
2019 (English)In: Journal of Pain Research, ISSN 1178-7090, E-ISSN 1178-7090, Vol. 12, p. 1017-1023Article in journal (Refereed) Published
Abstract [en]

Objectives: Pain is reported as one of the most common and burdensome symptoms for children with cancer. Pain catastrophizing is clearly related to pain intensity and disability. Catastrophizing in parents is associated with both child functioning and parent distress. The Pain Catastrophizing Scale for Parents (PCS-P) remains to be validated for parents of children with cancer. The aim of the study was to validate the Swedish version of the PCS-P for parents of children with cancer experiencing pain.

Methods: Parents of all children who were being treated for cancer in Sweden at the time of the study were invited to participate. Study material was sent out to the registered address. Internal consistency, test-retest reliability, and convergent validity were calculated, and factor analysis was conducted. Descriptive statistics was used to investigate the background data and norm values.

Results: A total of 243 parents participated in the study. The results did not support the original three-factor structure of the PCS-P, but rather suggested that a two-factor structure best represented the data. The results showed excellent internal consistency (alpha=0.93), excellent temporal stability (intraclass correlation coefficient =0.86) and moderate convergent validity (rho=0.57). The mean (SD) for the PCS-P in the sample was 28.3 (10.7). A statistically significant difference was found between mothers and fathers, where mothers reported a higher level of pain catastrophizing than fathers.

Conclusion: The psychometric properties of the PCS-P has now been supported in a sample of parents of children with cancer, and norm values are now available. The factor structure does, however, deserve more investigation.

Place, publisher, year, edition, pages
DOVE MEDICAL PRESS LTD, 2019
Keywords
The Pain Catastrophizing Scale for Parents (PCS-P), validation, parents, cancer, pain
National Category
Nursing
Identifiers
urn:nbn:se:uu:diva-381933 (URN)10.2147/JPR.S193164 (DOI)000462266800003 ()30936740 (PubMedID)
Funder
Swedish Childhood Cancer Foundation, PR2013-0058Swedish Cancer Society, CAN2013/749
Available from: 2019-04-16 Created: 2019-04-16 Last updated: 2019-04-16Bibliographically approved
Thorsell Cederberg, J., Weineland, S., Dahl, J. & Ljungman, G. (2018). A preliminary validation of the Swedish short version of the Avoidance and Fusion Questionnaire for Youth (AFQ-Y8) for children and adolescents with cancer. Journal of Contextual Behavioral Science, 10, 103-107
Open this publication in new window or tab >>A preliminary validation of the Swedish short version of the Avoidance and Fusion Questionnaire for Youth (AFQ-Y8) for children and adolescents with cancer
2018 (English)In: Journal of Contextual Behavioral Science, ISSN 2212-1447, Vol. 10, p. 103-107Article in journal (Refereed) Published
Abstract [en]

Psychological inflexibility constitutes a generalized vulnerability for psychopathology. Children and adolescents undergoing cancer treatment are faced with numerous physical and psychological stressors throughout their cancer trajectory. Most of the survivors show resilience but some groups report psychological ill-health and poor quality-of-life long-term. Psychological flexibility has been shown to mediate improvements in psychological health for cancer patients. The Avoidance and Fusion Questionnaire for Youth (AFQ-Y) is the most frequently used measure of psychological inflexibility in children and adolescents. It correlates with a wide range of measures of mental health and long-term functional behavior. The aim of the study was to investigate norm values, psychometric properties and factor structure of the AFQ-Y8 for children and adolescents with cancer. All children and adolescents, aged 7-18 years of age, undergoing cancer treatment in Sweden at the time of the study were invited to participate. Norm values, internal consistency, test-retest reliability and convergent validity were calculated and an exploratory factor analysis was conducted. 62 children participated. The mean of the AFQ-Y8 in the sample was 10.30 (5.75). Internal consistency was acceptable (alpha = 0.76), test-retest reliability was good (ICC = 0.64) and convergent validity was demonstrated (r = 0.42). Norm values are now available, and the psychometric properties supported, for the AFQ-Y8 for children and adolescents with cancer. This provides implications for the prevention and treatment of psychopathology for this population. However, the one-factor structure of the AFQ-Y8 was not unequivocally supported. The results from the PCA rather suggested a two-factor structure. Due to the small sample of the study, the results should be seen as preliminary and further validation is warranted, specifically with regards to factorial validity and sensitivity to change.

Keywords
Psychological inflexibility, Cognitive fusion, Experiential avoidance, Psychological flexibility, Children and adolescents, Cancer
National Category
Psychiatry Psychology (excluding Applied Psychology)
Identifiers
urn:nbn:se:uu:diva-371414 (URN)10.1016/j.jcbs.2018.09.004 (DOI)000450806800013 ()
Funder
Swedish Childhood Cancer Foundation, PR2013-0058Swedish Cancer Society, CAN2013/749
Available from: 2018-12-20 Created: 2018-12-20 Last updated: 2018-12-20Bibliographically approved
Organisations
Identifiers
ORCID iD: ORCID iD iconorcid.org/0000-0002-4949-2494

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