LIVIVO - The Search Portal for Life Sciences

zur deutschen Oberfläche wechseln
Advanced search

Search results

Result 1 - 10 of total 17

Search options

  1. Article ; Online: Child participation during outpatient consultations: a mixed methods study.

    Koenis, Maud M / Vroman, Heleen / Brand, Paul L P / van Woerden, Christiaan S

    European journal of pediatrics

    2024  

    Abstract: Although children wish to be included in their own healthcare, they recognize a gap between their right to be heard and their ability to become involved. Despite adaptation of medical consultation styles which suit a more patient-centered approach, data ... ...

    Abstract Although children wish to be included in their own healthcare, they recognize a gap between their right to be heard and their ability to become involved. Despite adaptation of medical consultation styles which suit a more patient-centered approach, data on the current state of child participation in clinical encounters are missing. We aimed to assess actual child participation in a Dutch pediatric clinic. Children aged 4-18 years visiting a pediatric outpatient clinic for consultation after general practitioner's referral were included. Sixteen consultations of six pediatricians were recorded and transcribed verbatim. Quantitative measurement included word count and speech turn; conversation analysis with qualitative appraisal provided data on participatory behavior. Quantitative child participation equaled parent participation in turns (28% vs 29%, respectively), but remained limited in words (relative contribution 11% for child, 23% for parent and 66% for pediatrician). Children spoke on average six words per speech turn. Child age correlated positively with participation in words (p = 0.022, r = 0.566) and turns (p =  < 0.001, r = 0.746). Children were mostly involved during social history taking, introduction, and physical examination but did not actively speak during the decision-making process. Children took an active role by instigating talks. Qualitative facilitators included appropriate language and verbal or non-verbal child allocated turns. Adults involved children by asking them questions and verifying their opinions or plans with the child. Teenagers participated most during the entire consultation, while younger children were more likely to lose their focus by the end of the conversation.
    Conclusion: Despite increased turn taking, children's verbal participation remains low in pediatric consultations. If pediatricians and parents maintain a triadic conversation style throughout every stage of the medical encounter, child participation may increase.
    What is known: • Verbal child participation varies between 4 and 17%, measured in turns, words, speech time, or utterances. • Child participation is limited to social talk, laughter, and providing medical information.
    What is new: • Child speech turns equal parental speech turns (28%), but average relative word count remains low (11%). • Three percent of the children's turns are defined a "contributing in decision making, giving their opinion or give consent," which equals three turns per consultation.
    Language English
    Publishing date 2024-04-19
    Publishing country Germany
    Document type Journal Article
    ZDB-ID 194196-3
    ISSN 1432-1076 ; 0340-6199 ; 0943-9676
    ISSN (online) 1432-1076
    ISSN 0340-6199 ; 0943-9676
    DOI 10.1007/s00431-024-05566-8
    Database MEDical Literature Analysis and Retrieval System OnLINE

    More links

    Kategorien

  2. Article ; Online: Child participation in triadic medical consultations: A scoping review and summary of promotive interventions.

    van Woerden, Christiaan S / Vroman, Heleen / Brand, Paul L P

    Patient education and counseling

    2023  Volume 113, Page(s) 107749

    Abstract: Objectives: To promote patient centered care, children with health issues should be supported to participate in consultations with health care professionals. We aimed to summarize, in a scoping review, the evidence on child participation in triadic ... ...

    Abstract Objectives: To promote patient centered care, children with health issues should be supported to participate in consultations with health care professionals. We aimed to summarize, in a scoping review, the evidence on child participation in triadic encounters and its promotive interventions.
    Methods: Two researchers systematically searched four major databases, and included studies on child participation in medical consultations. A synthesis of quantitative and qualitative data was made.
    Results: Of 1678 retrieved records, 39 papers were included: 22 quantitative, 14 qualitative and 3 mixed-methods studies. Child participation, measured by utterances, turns or speech time, ranged between 4% and 14%. Participation increased with age. Equidistant seating arrangements, child-directed gaze and finding the appropriate tone of voice by the physician promoted child participation. Despite all facilitative efforts of doctors and parents, such as social talk, eHealth tools or consultation education, no increase in child participation was observed over the last 50 years.
    Conclusions: Children continue to participate only marginally in medical consultations, despite their desire to be involved in various aspects of the clinical encounter and their right to have their voice heard.
    Practice implications: Health care professionals should provide more opportunities for children to participate in triadic medical encounters and create an inclusive environment.
    MeSH term(s) Humans ; Communication ; Patient Participation/methods ; Health Personnel ; Physicians ; Referral and Consultation
    Language English
    Publishing date 2023-04-11
    Publishing country Ireland
    Document type Systematic Review ; Journal Article ; Review
    ZDB-ID 605590-4
    ISSN 1873-5134 ; 0738-3991
    ISSN (online) 1873-5134
    ISSN 0738-3991
    DOI 10.1016/j.pec.2023.107749
    Database MEDical Literature Analysis and Retrieval System OnLINE

    More links

    Kategorien

  3. Article ; Online: Correction: Development of a standard set of PROs and generic PROMs for Dutch medical specialist care.

    Voshaar, Martijn Oude / Terwee, Caroline B / Haverman, Lotte / van der Kolk, Bas / Harkes, Marleen / van Woerden, Christiaan S / van Breda, Fenna / Breukink, Stephanie / de Hoop, Irma / Vermeulen, Hester / de Graaf, Evelien / Hazelzet, Jan / van Leiden, Barbara / Stienen, Jozette / Hoekstra, Marian / Bart, Hans / van Bommel, Hester / Determann, Domino / Verburg, Mariët /
    van der Wees, Philip / Beurskens, Anna J

    Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation

    2023  Volume 32, Issue 6, Page(s) 1607

    Language English
    Publishing date 2023-04-06
    Publishing country Netherlands
    Document type Published Erratum
    ZDB-ID 1161148-0
    ISSN 1573-2649 ; 0962-9343
    ISSN (online) 1573-2649
    ISSN 0962-9343
    DOI 10.1007/s11136-023-03412-2
    Database MEDical Literature Analysis and Retrieval System OnLINE

    More links

    Kategorien

  4. Article ; Online: Development of a standard set of PROs and generic PROMs for Dutch medical specialist care : Recommendations from the Outcome-Based Healthcare Program Working Group Generic PROMs.

    Oude Voshaar, Martijn / Terwee, Caroline B / Haverman, Lotte / van der Kolk, Bas / Harkes, Marleen / van Woerden, Christiaan S / van Breda, Fenna / Breukink, Stephanie / de Hoop, Irma / Vermeulen, Hester / de Graaf, Evelien / Hazelzet, Jan / van Leiden, Barbara / Stienen, Jozette / Hoekstra, Marian / Bart, Hans / van Bommel, Hester / Determann, Domino / Verburg, Mariët /
    van der Wees, Philip / Beurskens, Anna J

    Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation

    2023  Volume 32, Issue 6, Page(s) 1595–1605

    Abstract: Purpose: The added value of measuring patient-reported outcomes (PROs) for delivering patient-centered care and assessment of healthcare quality is increasingly evident. However, healthcare system wide data collection initiatives are hampered by the ... ...

    Abstract Purpose: The added value of measuring patient-reported outcomes (PROs) for delivering patient-centered care and assessment of healthcare quality is increasingly evident. However, healthcare system wide data collection initiatives are hampered by the proliferation of patient-reported outcome measures (PROMs) and conflicting data collection standards. As part of a national initiative of the Dutch Ministry of Health, Welfare and Sport we developed a consensus-based standard set of generic PROs and PROMs to be implemented across Dutch medical specialist care.
    Methods: A working group of mandated representatives of umbrella organizations involved in Dutch medical specialist care, together with PROM experts and patient organizations worked through a structured, consensus-driven co-creation process. This included literature reviews, online expert and working group meetings, and feedback from national patient- and umbrella organizations. The 'PROM-cycle' methodology was used to select feasible, valid, and reliable PROMs to obtain domain scores for each of the PROs included in the set.
    Results: Eight PROs across different domains of health were ultimately endorsed: symptoms (pain & fatigue), functioning (physical, social/participation, mental [anxiety & depression]), and overarching (quality of life & perceived overall health). A limited number of generic PROMs was endorsed. PROMIS short forms were selected as the preferred instruments for all PROs. Several recommendations were formulated to facilitate healthcare system level adoption and implementation of the standard set.
    Conclusions: We developed a consensus-based standard set of Generic PROMs and a set of recommendations to facilitate healthcare system wide implementation across Dutch medical specialist care.
    MeSH term(s) Humans ; Quality of Life/psychology ; Patient Care ; Patient Reported Outcome Measures ; Data Collection ; Delivery of Health Care
    Language English
    Publishing date 2023-02-09
    Publishing country Netherlands
    Document type Journal Article
    ZDB-ID 1161148-0
    ISSN 1573-2649 ; 0962-9343
    ISSN (online) 1573-2649
    ISSN 0962-9343
    DOI 10.1007/s11136-022-03328-3
    Database MEDical Literature Analysis and Retrieval System OnLINE

    More links

    Kategorien

  5. Article ; Online: Data from a large European study indicate that the outcome of primary hyperoxaluria type 1 correlates with the AGXT mutation type.

    Mandrile, Giorgia / van Woerden, Christiaan S / Berchialla, Paola / Beck, Bodo B / Acquaviva Bourdain, Cécile / Hulton, Sally-Anne / Rumsby, Gill

    Kidney international

    2014  Volume 86, Issue 6, Page(s) 1197–1204

    Abstract: Primary hyperoxaluria type 1 displays a heterogeneous phenotype, likely to be affected by genetic and non-genetic factors, including timeliness of diagnosis and quality of care. As previous genotype-phenotype studies were hampered by limited patient ... ...

    Abstract Primary hyperoxaluria type 1 displays a heterogeneous phenotype, likely to be affected by genetic and non-genetic factors, including timeliness of diagnosis and quality of care. As previous genotype-phenotype studies were hampered by limited patient numbers the European OxalEurope Consortium was constituted. This preliminary retrospective report is based on 526 patients of which 410 have the AGXT genotype defined. We grouped mutations by the predicted effect as null, missense leading to mistargeting (G170R), and other missense, and analyzed their phenotypic correlations. Median age of end-stage renal disease increased from 9.9 for 88 homozygous null patients, 11.5 for 42 heterozygous null/missense, 16.9 for 116 homozygous missense patients, 25.1 for 61 G170R/null patients, 31.2 for 32 G170R/missense patients, and 33.9 years for 71 homozygous G170R patients. The outcome of some recurrent missense mutations (p.I244T, p.F152I, p.M195R, p.D201E, p.S81L, p.R36C) and an unprecedented number of G170R homozygotes is described in detail. Diagnosis is still delayed and actions aimed at increasing awareness of primary hyperoxaluria type 1 are recommended. Thus, in addition to G170R, other causative mutations are associated with later onset of end-stage renal disease. The OxalEurope registry will provide necessary tools for characterizing those genetic and non-genetic factors through a combination of genetic, functional, and biostatistical approaches.
    MeSH term(s) Adolescent ; Adult ; Age of Onset ; Child ; Child, Preschool ; Codon, Nonsense ; Delayed Diagnosis ; Europe ; Female ; Frameshift Mutation ; Heterozygote ; Homozygote ; Humans ; Hyperoxaluria, Primary/complications ; Hyperoxaluria, Primary/diagnosis ; Hyperoxaluria, Primary/genetics ; Infant ; Kidney Failure, Chronic/etiology ; Male ; Middle Aged ; Mutation ; Mutation, Missense ; Phenotype ; Retrospective Studies ; Survival Rate ; Transaminases/genetics ; Urolithiasis/etiology ; Young Adult
    Chemical Substances Codon, Nonsense ; Transaminases (EC 2.6.1.-) ; Alanine-glyoxylate transaminase (EC 2.6.1.44)
    Language English
    Publishing date 2014-07-02
    Publishing country United States
    Document type Journal Article
    ZDB-ID 120573-0
    ISSN 1523-1755 ; 0085-2538
    ISSN (online) 1523-1755
    ISSN 0085-2538
    DOI 10.1038/ki.2014.222
    Database MEDical Literature Analysis and Retrieval System OnLINE

    More links

    Kategorien

  6. Article: Postponing urine acidification for 24 h does not change the oxalate concentration.

    van Woerden, Christiaan S / Huidekoper, Hidde H / Groothoff, Jaap W / Wijburg, Frits A / Duran, Marinus

    Clinica chimica acta; international journal of clinical chemistry

    2007  Volume 384, Issue 1-2, Page(s) 184–185

    MeSH term(s) Acids/chemistry ; Calcium Oxalate/urine ; Humans ; Hyperoxaluria, Primary/diagnosis ; Sensitivity and Specificity ; Urinalysis/methods
    Chemical Substances Acids ; Calcium Oxalate (2612HC57YE)
    Language English
    Publishing date 2007-09
    Publishing country Netherlands
    Document type Letter
    ZDB-ID 80228-1
    ISSN 1873-3492 ; 0009-8981
    ISSN (online) 1873-3492
    ISSN 0009-8981
    DOI 10.1016/j.cca.2007.06.007
    Database MEDical Literature Analysis and Retrieval System OnLINE

    More links

    Kategorien

  7. Article: Primary hyperoxaluria remains undiagnosed in patients with hyperoxaluria and recurrent urolithiasis.

    van Woerden, Christiaan S / Groothoff, Jaap W / Wijburg, Frits A / Waterham, Hans R / Wanders, Ronald J A / Janssen, Marcel J W / Duran, Marinus

    Clinical chemistry

    2007  Volume 53, Issue 8, Page(s) 1553–1555

    MeSH term(s) Adult ; Aged ; Aged, 80 and over ; Cohort Studies ; Humans ; Hyperoxaluria/complications ; Hyperoxaluria/diagnosis ; Hyperoxaluria, Primary/complications ; Hyperoxaluria, Primary/diagnosis ; Middle Aged ; Recurrence ; Urolithiasis/etiology
    Language English
    Publishing date 2007-07-18
    Publishing country England
    Document type Letter
    ZDB-ID 80102-1
    ISSN 1530-8561 ; 0009-9147
    ISSN (online) 1530-8561
    ISSN 0009-9147
    DOI 10.1373/clinchem.2007.090688
    Database MEDical Literature Analysis and Retrieval System OnLINE

    More links

    Kategorien

  8. Article: Carrier frequency of the V377I (1129G>A) MVK mutation, associated with Hyper-IgD and periodic fever syndrome, in the Netherlands.

    Houten, Sander M / van Woerden, Christiaan S / Wijburg, Frits A / Wanders, Ronald J A / Waterham, Hans R

    European journal of human genetics : EJHG

    2003  Volume 11, Issue 2, Page(s) 196–200

    Abstract: Hyper-IgD and periodic fever syndrome (HIDS) and mevalonic aciduria (MA) are two autosomal recessive disorders that both are caused by a deficient activity of the enzyme mevalonate kinase (MK) due to mutations in the encoding gene (MVK). The most ... ...

    Abstract Hyper-IgD and periodic fever syndrome (HIDS) and mevalonic aciduria (MA) are two autosomal recessive disorders that both are caused by a deficient activity of the enzyme mevalonate kinase (MK) due to mutations in the encoding gene (MVK). The most frequently occurring MVK mutation, V377I (1129G>A), has been identified exclusively in HIDS patients. Other common mutations have been associated with both HIDS and MA. To estimate the incidence of MK deficiency in the Netherlands, we determined the carrier frequency of the V377I mutation in genomic DNA extracted from anonymised newborn screening cards by PCR-RFLP. We found 14 carriers among 2138 analysed samples (1 : 153). Based on the V377I allele frequency of 42% in patients diagnosed with MK deficiency, the carrier frequency of any MVK mutation in the Dutch population can be calculated as 1 : 65. This predicts a disease incidence between 1 in 5196 and 1 in 53 656, which is far more than actually observed. Although under-diagnosis of patients with MK deficiency remains possible, this discrepancy probably is due to a reduced penetrance of V377I homozygosity. Analysis of the distribution of the V377I allele within patients carrying MVK mutations revealed that this was not according to the Hardy-Weinberg equilibrium principle, most probably due to an under-representation of V377I homozygotes in HIDS. Homozygotes for V377I might exhibit a much milder phenotype of MK deficiency or no disease-phenotype at all.
    MeSH term(s) Familial Mediterranean Fever/genetics ; Gene Frequency ; Heterozygote ; Immunoglobulin D/genetics ; Immunoglobulin D/immunology ; Netherlands ; Phosphotransferases (Alcohol Group Acceptor)/deficiency ; Phosphotransferases (Alcohol Group Acceptor)/genetics ; Phosphotransferases (Alcohol Group Acceptor)/metabolism ; Point Mutation ; Polymerase Chain Reaction ; Polymorphism, Restriction Fragment Length
    Chemical Substances Immunoglobulin D ; Phosphotransferases (Alcohol Group Acceptor) (EC 2.7.1.-) ; mevalonate kinase (EC 2.7.1.36)
    Language English
    Publishing date 2003-02
    Publishing country England
    Document type Journal Article ; Research Support, Non-U.S. Gov't
    ZDB-ID 1141470-4
    ISSN 1476-5438 ; 1018-4813
    ISSN (online) 1476-5438
    ISSN 1018-4813
    DOI 10.1038/sj.ejhg.5200933
    Database MEDical Literature Analysis and Retrieval System OnLINE

    More links

    Kategorien

  9. Article: Primary hyperoxaluria type 1 in The Netherlands: prevalence and outcome.

    van Woerden, Christiaan S / Groothoff, Jaap W / Wanders, Ronald J A / Davin, Jean-Claude / Wijburg, Frits A

    Nephrology, dialysis, transplantation : official publication of the European Dialysis and Transplant Association - European Renal Association

    2003  Volume 18, Issue 2, Page(s) 273–279

    Abstract: Background: Primary hyperoxaluria type 1 (PH1) is a phenotypically heterogeneous disease. To date the relationship between biochemical parameters and outcome is unclear. We therefore undertook a national cohort study on biochemical and clinical ... ...

    Abstract Background: Primary hyperoxaluria type 1 (PH1) is a phenotypically heterogeneous disease. To date the relationship between biochemical parameters and outcome is unclear. We therefore undertook a national cohort study on biochemical and clinical parameters and outcome in PH1.
    Methods: Review of medical charts of all Dutch PH1 patients, who were identified by sending questionnaires to all Dutch nephrologists for children and adults.
    Results: Fifty-seven patients were identified. The prevalence and incidence rates were 2.9/10(6) and 0.15/10(6)/year, respectively. Median age at diagnosis was 7.3 years (range 0-57). Seventeen (30%) patients were older than 18 years at time of diagnosis, of whom 10 (59%) presented with end-stage renal disease (ESRD), in contrast to only nine (23%) of those aged under 18 years. Median age at initial symptoms was 6.0 years (range 0-50). In four of nine patients with infantile PH1, normal renal function was preserved after a median follow-up of 7.7 years (range 0.1-16). Progression to renal insufficiency was associated with the presence of nephrocalcinosis, as assessed by ultrasound (relative risk=1.8; 95% CI, 1.0-3.4) and with pyridoxine-unresponsiveness (relative risk=2.2; 95% CI, 1.1-4.2) but not with age at presentation, the extent of hyperoxaluria, or AGT activity. No apparent nephrocalcinosis was found in five of the 19 patients who presented with ESRD.
    Conclusions: Although more than one-half of the PH1 patients have symptoms under the age of 10 years, PH1 can present at any age. In adults, PH1 presents predominantly with ESRD, which may be due to misinterpretation of early symptoms. Although nephrocalcinosis is correlated with development of renal insufficiency, the latter can occur even in the absence of nephrocalcinosis. Pyridoxine sensitivity is associated with better outcome in PH1.
    MeSH term(s) Adolescent ; Adult ; Age of Onset ; Child ; Child, Preschool ; Cohort Studies ; Female ; Follow-Up Studies ; Humans ; Hyperoxaluria, Primary/classification ; Hyperoxaluria, Primary/complications ; Hyperoxaluria, Primary/diagnosis ; Hyperoxaluria, Primary/epidemiology ; Incidence ; Infant ; Infant, Newborn ; Kidney Failure, Chronic/epidemiology ; Kidney Failure, Chronic/etiology ; Kidney Failure, Chronic/therapy ; Male ; Middle Aged ; Nephrocalcinosis/epidemiology ; Nephrocalcinosis/etiology ; Netherlands/epidemiology ; Prevalence ; Renal Dialysis ; Risk ; Survival Analysis
    Language English
    Publishing date 2003-02
    Publishing country England
    Document type Journal Article
    ZDB-ID 90594-x
    ISSN 1460-2385 ; 0931-0509
    ISSN (online) 1460-2385
    ISSN 0931-0509
    DOI 10.1093/ndt/18.2.273
    Database MEDical Literature Analysis and Retrieval System OnLINE

    More links

    Kategorien

  10. Article: High incidence of hyperoxaluria in generalized peroxisomal disorders.

    van Woerden, Christiaan S / Groothoff, Jaap W / Wijburg, Frits A / Duran, Marinus / Wanders, Ronald J A / Barth, Peter G / Poll-The, Bwee Tien

    Molecular genetics and metabolism

    2006  Volume 88, Issue 4, Page(s) 346–350

    Abstract: The Zellweger spectrum disorders (ZSDs) are characterized by a generalized loss of peroxisomal functions caused by deficient peroxisomal assembly. Clinical presentation and survival are heterogeneous. Although most peroxisomal enzymes are unstable in the ...

    Abstract The Zellweger spectrum disorders (ZSDs) are characterized by a generalized loss of peroxisomal functions caused by deficient peroxisomal assembly. Clinical presentation and survival are heterogeneous. Although most peroxisomal enzymes are unstable in the cytosol of peroxisome-deficient cells of ZSD patients, a few enzymes remain stable among which alanine:glyoxylate aminotransferase (AGT). Its deficiency causes primary hyperoxaluria type 1 (PH1, MIM 259900), an inborn error of glyoxylate metabolism characterized by hyperoxaluria, nephrocalcinosis, and renal insufficiency. Despite the normal level of AGT activity in ZSD patients, hyperoxaluria has been reported in several ZSD patients. We observed the unexpected occurrence of renal stones in a cohort of ZSD patients. This led us to perform a study in this cohort to determine the prevalence of hyperoxaluria in ZSDs and to find clinically relevant clues that correlate with the urinary oxalate load. We reviewed medical charts of 31 Dutch ZSD patients with prolonged survival (>1 year). Urinary oxalate excretion was assessed in 23 and glycolate in 22 patients. Hyperoxaluria was present in 19 (83%), and hyperglycolic aciduria in 14 (64%). Pyridoxine treatment in six patients did not reduce the oxalate excretion as in some PH1 patients. Renal involvement with urolithiasis and nephrocalcinosis was present in five of which one developed end-stage renal disease. The presence of hyperoxaluria, potentially leading to severe renal involvement, was statistically significant correlated with the severity of neurological dysfunction. ZSD patients should be screened by urinalysis for hyperoxaluria and renal ultrasound for nephrocalcinosis in order to take timely measures to prevent renal insufficiency.
    MeSH term(s) Adolescent ; Child ; Child, Preschool ; Cohort Studies ; Glycolates/urine ; Humans ; Hyperoxaluria/complications ; Hyperoxaluria/metabolism ; Infant ; Kidney Calculi/etiology ; Kidney Calculi/physiopathology ; Oxalates/urine ; Renal Insufficiency/etiology ; Renal Insufficiency/physiopathology ; Retrospective Studies ; Zellweger Syndrome/complications ; Zellweger Syndrome/metabolism
    Chemical Substances Glycolates ; Oxalates ; glycolic acid (0WT12SX38S)
    Language English
    Publishing date 2006-08
    Publishing country United States
    Document type Journal Article ; Research Support, Non-U.S. Gov't
    ZDB-ID 1418518-0
    ISSN 1096-7206 ; 1096-7192
    ISSN (online) 1096-7206
    ISSN 1096-7192
    DOI 10.1016/j.ymgme.2006.03.004
    Database MEDical Literature Analysis and Retrieval System OnLINE

    More links

    Kategorien

To top