A retrospective study of needs and interventions among patients with myotonic dystrophy type 1 in Denmark referred to rehabilitation in the period 2000-2019

TY - JOUR

T1 - A retrospective study of needs and interventions among patients with myotonic dystrophy type 1 in Denmark referred to rehabilitation in the period 2000-2019

AU - Allergodt, Kristin

AU - Handberg, Charlotte

AU - Frost, Asger

AU - Werlauff, Ulla

PY - 2023/2

Y1 - 2023/2

N2 - RATIONALE, AIMS AND OBJECTIVES: Myotonic dystrophy type 1 (DM1) is a progressive multisystem disorder that requires a special focus on the delivery of health and rehabilitation. The aim of the study was to identify the needs and interventions in patients with DM1 referred to a national rehabilitation hospital and to illustrate the needs and interventions in relation to predefined subgroups of disease classification.METHOD: Electronic medical records from the period 2000-2019 of a randomized sample of patients with DM1 (N = 193) were reviewed to identify rehabilitation needs and interventions. The sample was classified into four subgroups of disease classifications. The number of identified needs and interventions were presented as medians and range, and differences between subgroups were illustrated by Kruskal-Wallis one-way analysis of variance. The needs were categorized using the International Classification of Functioning, Disability and Health (ICF).RESULTS: A total of 2099 needs and 2103 interventions were registered. The most frequent needs were coordination of healthcare services (480) and employment and income (363), while the most frequent interventions were counselling (835) and follow-up (386). Patients with congenital DM1 had the most needs and interventions per person. In relation to the ICF, the most registered needs were environmental factors (880) and activity and participation (848).CONCLUSION: All subgroups of patients with DM1 had a substantial number of needs and interventions related to coordinating and navigating within the healthcare system. The subgroup of patients with congenital DM1 had the most needs and interventions compared to the other subgroups.

AB - RATIONALE, AIMS AND OBJECTIVES: Myotonic dystrophy type 1 (DM1) is a progressive multisystem disorder that requires a special focus on the delivery of health and rehabilitation. The aim of the study was to identify the needs and interventions in patients with DM1 referred to a national rehabilitation hospital and to illustrate the needs and interventions in relation to predefined subgroups of disease classification.METHOD: Electronic medical records from the period 2000-2019 of a randomized sample of patients with DM1 (N = 193) were reviewed to identify rehabilitation needs and interventions. The sample was classified into four subgroups of disease classifications. The number of identified needs and interventions were presented as medians and range, and differences between subgroups were illustrated by Kruskal-Wallis one-way analysis of variance. The needs were categorized using the International Classification of Functioning, Disability and Health (ICF).RESULTS: A total of 2099 needs and 2103 interventions were registered. The most frequent needs were coordination of healthcare services (480) and employment and income (363), while the most frequent interventions were counselling (835) and follow-up (386). Patients with congenital DM1 had the most needs and interventions per person. In relation to the ICF, the most registered needs were environmental factors (880) and activity and participation (848).CONCLUSION: All subgroups of patients with DM1 had a substantial number of needs and interventions related to coordinating and navigating within the healthcare system. The subgroup of patients with congenital DM1 had the most needs and interventions compared to the other subgroups.

KW - International Classification of Functioning

KW - delivery of health care, Disability and Health

KW - health services

KW - myotonic dystrophy

KW - neuromuscular diseases

KW - rehabilitation

UR - http://www.scopus.com/inward/record.url?scp=85130604565&partnerID=8YFLogxK

U2 - 10.1111/jep.13706

DO - 10.1111/jep.13706

M3 - Journal article

C2 - 35615973

SN - 1365-2753

VL - 29

SP - 39

EP - 48

JO - Journal of Evaluation in Clinical Practice

JF - Journal of Evaluation in Clinical Practice

IS - 1

ER -