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  • 1.
    Hjorth, Elin
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Kreicbergs, Ulrika
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet, Astrid Lindgrens barnsjukhus.
    Sejersen, Thomas
    Karolinska institutet, Astrid Lindgrens barnsjukhus.
    Lövgren, Malin
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet, Astrid Lindgrens barnsjukhus.
    Parents' advice to healthcare professionals working with children who have spinal muscular atrophy2018In: European journal of paediatric neurology, ISSN 1090-3798, E-ISSN 1532-2130, Vol. 22, no 1, p. 128-134, article id S1090-3798(17)30897-8Article in journal (Refereed)
    Abstract [en]

    AIM: To explore parents' advice to healthcare professionals working with children with spinal muscular atrophy (SMA).

    MATERIALS AND METHODS: This study derives from a Swedish nationwide survey and uses content analysis to make inferences from answers to an open-ended question concerning parent's advice to healthcare professionals. Of eligible parents who had a child born in Sweden between 2000 and 2010, diagnosed with SMA type 1 or 2, and for whom respiratory support was considered in the first year of life, 61 participated in the study (response rate: 87%). Of these, 51 parents answered the question about advice to healthcare professionals working with children with SMA.

    RESULTS: More than half of the advice from parents was related to professional-family relations. The second most frequent type of advice related to two aspects of knowledge about SMA: desire that healthcare professionals possess knowledge, and desire that they provide knowledge. The parents also had advice concerning support in daily life, both to the parents and to the affected child. Other pieces of advice were related to organization of care and the parents' desire to be involved in the child's care.

    CONCLUSIONS: Parents advised healthcare professionals to increase their disease-specific knowledge, to treat the parents as experts on their child, and to treat the family with respect, particularly in situations where the child's case is used as an opportunity to improve healthcare professionals' competence. Increased practical support in daily life and a case coordinator is also among parents' advice to healthcare professionals.

  • 2.
    Landfeldt, Erik
    et al.
    IQVIA, Stockholm.
    Udo, Camilla
    Marie Cederschiöld University, Department of Health Care Sciences, Palliative Research Centre, PRC. Department of Social Work, Stockholm University, Stockholm; School of Health and Welfare, Dalarna University, Falun; Center for Clinical Research Dalarna-Uppsala University, Falun.
    Lövgren, Malin
    Marie Cederschiöld University, Department of Health Care Sciences, Palliative Research Centre, PRC. Advanced Pediatric Home Care, Astrid Lindgren Children's Hospital, Karolinska University Hospital, Stockholm.
    Sejersen, Thomas
    Department of Neuropediatrics, Astrid Lindgren Children's Hospital, Karolinska University Hospital, Stockholm; Department of Women's and Children's Health, Karolinska Institutet, Stockholm.
    Kreicbergs, Ulrika
    Marie Cederschiöld University, Department of Health Care Sciences, Palliative Research Centre, PRC. Department of Women's and Children's Health, Karolinska Institutet, Stockholm.
    Health-related quality of life of children with spinal muscular atrophy in Sweden: A prospective cohort study in the era of disease-modifying therapy2023In: European journal of paediatric neurology, ISSN 1090-3798, E-ISSN 1532-2130, Vol. 46, p. 67-73Article in journal (Refereed)
    Abstract [en]

    The objective of this study was to estimate change over time in health-related quality of life (HRQoL) of children with spinal muscular atrophy (SMA) in Sweden. Children with SMA were identified via the National Patient Register by the National Board of Health and Welfare in Sweden. Patient HRQoL was caregiver proxy-assessed using the Pediatric Quality of Life Inventory 4.0 Generic Core Scales at baseline, as well as at 6, 12, and 18 months of follow-up. Results were stratified by SMA type. Mothers and fathers to 27 children with SMA (mean patient age: 9.17 years; 59% female) participated in the study. All patients received disease-modifying therapy. At baseline, across SMA types, the mean total score was estimated at between 52.68 and 59.19, Physical Functioning score at between 26.39 and 40.34, Emotional Functioning score at between 66.82 and 68.57, Social Functioning score at between 55.00 and 70.45, and School Functioning score at between 70.45 and 78.33. The mean annual total score change was estimated at −2.03 for SMA type I, 4.11 for SMA type II, and 1.12 for SMA type III. In conclusion, we show that SMA has a detrimental impact on HRQoL that extends above and beyond somatic disability. Children with SMA type II experienced a dramatic increase in HRQoL over time, predominantly related to improvement in physical and social functioning. Our data helps quantify the patient burden of disease and adds to the rapidly expanding body of evidence of the effectiveness of recently approved disease-modifying therapies for SMA.

  • 3.
    Lövgren, Malin
    et al.
    Ersta Sköndal University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet.
    Sejersen, Thomas
    Karolinska institutet.
    Kreicbergs, Ulrika
    Ersta Sköndal University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet.
    Information and treatment decisions in severe Spinal muscular atrophy: A parental follow-up2016In: European journal of paediatric neurology, ISSN 1090-3798, E-ISSN 1532-2130, Vol. 20, no 6, p. 830-838Article in journal (Refereed)
    Abstract [en]

    Introduction

    The parents of children with severe spinal muscular atrophy (SMA) face difficult ethical decisions regarding their child's treatment. This study explored the experience of parents of children with severe SMA concerning information and treatment decisions.

    Material and methods

    This nationwide survey, conducted in 2013, is based on parents of children who were born in Sweden between 2000 and 2010 and later diagnosed with SMA type I or II where respiratory support was considered the first year of life (N = 61, participation rate: 87%). The survey involved parents' perception of the child's care and the questions used in this study covered information given and treatment decisions. Descriptive statistics were used.

    Results

    None of the parents reported that the health care professionals made decisions concerning the child's treatment without informing them first, and 80% reported feeling confident about the decisions made. Of the bereaved parents, 11/48 (23%) reported that they got no information about respiratory support, compared to 2/13 (15%) of non-bereaved. Bereaved parents were more likely to report being satisfied with and understanding the information given about the illness and its treatment than non-bereaved parents.

    Conclusion

    All parents reported having been informed before treatment decisions were made and a vast majority reported feeling confident about the decisions. However, a quarter of the parents declined to have received information about respiratory support, which indicates that the parents did not sufficiently understand the available respiratory treatment options, and that their children may not receive the kind of care that is recommended in guidelines.

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