PMID- 30848487
OWN - NLM
STAT- MEDLINE
DCOM- 20190708
LR  - 20190708
IS  - 1600-0404 (Electronic)
IS  - 0001-6314 (Linking)
VI  - 139
IP  - 6
DP  - 2019 Jun
TI  - Uncovering health and social care needs among myotonic dystrophy patients: 
      Utility of the Needs and Provisions Complexity Scale.
PG  - 526-532
LID - 10.1111/ane.13086 [doi]
AB  - OBJECTIVES: Myotonic dystrophy type 1 (DM1) is a slowly progressive multisystem 
      disorder. Guidelines recommend multidisciplinary follow-up. We aimed to 
      investigate the presence of unmet health and social care needs among patients 
      with DM1 and whether unmet needs correlated with motor function, cognitive 
      impairments, or quality of life. MATERIAL AND METHODS: Patients were 22 adults 
      with DM1. "Needs and Provisions Complexity Scale" (NPCS) was applied to evaluate 
      the individual's needs and provision of health and social services. The Muscular 
      Impairment Rating Scale (MIRS) was used to measure motor function and disease 
      stage. All patients underwent neuropsychological testing. The EQ-5D-3L 
      questionnaire was used to evaluate the patients' health-related quality of life 
      (HRQoL). RESULTS: Median time from diagnosis was 11 years (range: 1-40). Twenty 
      patients had developed needs related to social care, personal care, and 
      rehabilitation that had not been met, whereas need for medical follow-up was 
      largely met. The more pronounced the muscular impairment, the more unmet needs 
      were experienced by DM1 patients (r = 0.50, P = 0.019). Degree of unmet needs did 
      not correlate with full-scale IQ (r = -0.27, P = 0.23) or HRQoL (r = -0.14, 
      P = 0.55). CONCLUSION: Using NPCS, we discovered that patients with DM1 had unmet 
      needs with respect to social care, personal care, and rehabilitation although 
      their need for medical follow-up was met. Thus, the use of NPCS helped bring our 
      practice in better accordance with guidelines. A higher MIRS grade should alert 
      the clinician to the likelihood of unmet needs.
CI  - (c) 2019 John Wiley & Sons A/S. Published by John Wiley & Sons Ltd.
FAU - Holmoy, Anne Katrin T
AU  - Holmoy AKT
AUID- ORCID: 0000-0001-8274-0667
AD  - Department of Neurohabilitation, Oslo University Hospital Ulleval, Oslo, Norway.
FAU - Johannessen, Cecilie Haggag
AU  - Johannessen CH
AD  - Department of Neurohabilitation, Oslo University Hospital Ulleval, Oslo, Norway.
AD  - NORMENT, KG Jebsen Centre of Psychosis Research, Institute of Clinical Medicine, 
      University of Oslo, Oslo, Norway.
FAU - Hope, Sigrun
AU  - Hope S
AD  - Department of Neurohabilitation, Oslo University Hospital Ulleval, Oslo, Norway.
AD  - NORMENT, KG Jebsen Centre of Psychosis Research, Institute of Clinical Medicine, 
      University of Oslo, Oslo, Norway.
FAU - van Walsem, Marleen R
AU  - van Walsem MR
AD  - Department of Neurohabilitation, Oslo University Hospital Ulleval, Oslo, Norway.
AD  - Research center for Habilitation and Rehabilitation Models and Services, 
      Institute of Health and Society, University of Oslo, Oslo, Norway.
FAU - Aanonsen, Nils Olav
AU  - Aanonsen NO
AD  - Department of Neurohabilitation, Oslo University Hospital Ulleval, Oslo, Norway.
FAU - Hassel, Bjornar
AU  - Hassel B
AD  - Department of Neurohabilitation, Oslo University Hospital Ulleval, Oslo, Norway.
AD  - Institute of Clinical Medicine, University of Oslo, Oslo, Norway.
LA  - eng
GR  - 2015-31/Fondsstiftelsen, Oslo University Hospital/
PT  - Journal Article
DEP - 20190325
PL  - Denmark
TA  - Acta Neurol Scand
JT  - Acta neurologica Scandinavica
JID - 0370336
SB  - IM
MH  - Adult
MH  - Female
MH  - *Health Services Needs and Demand
MH  - Humans
MH  - Male
MH  - Middle Aged
MH  - Myotonic Dystrophy/*psychology/*rehabilitation
MH  - Quality of Life
MH  - Surveys and Questionnaires
OTO - NOTNLM
OT  - cognitive function
OT  - healthcare delivery
OT  - myotonic dystrophy type 1
OT  - quality of life
OT  - social support
EDAT- 2019/03/09 06:00
MHDA- 2019/07/10 06:00
CRDT- 2019/03/09 06:00
PHST- 2018/12/21 00:00 [received]
PHST- 2019/02/21 00:00 [revised]
PHST- 2019/03/04 00:00 [accepted]
PHST- 2019/03/09 06:00 [pubmed]
PHST- 2019/07/10 06:00 [medline]
PHST- 2019/03/09 06:00 [entrez]
AID - 10.1111/ane.13086 [doi]
PST - ppublish
SO  - Acta Neurol Scand. 2019 Jun;139(6):526-532. doi: 10.1111/ane.13086. Epub 2019 Mar 
      25.