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The Burden of Primary Caregivers of Spinal Muscular Atrophy Patients and Their Needs

NCT04228718 · Status: COMPLETED · Type: OBSERVATIONAL · Enrollment: 34

Last updated 2020-05-14

No results posted yet for this study

Summary

The purpose of this study is to assess carer burden, needs, and expectations of Spinal Muscular Atrophy Parents

Conditions

Interventions

BEHAVIORAL

Zarit Burden Interview Scale

It is a questionnaire consisting of 22 items. A minimum score of 0 and a maximum score of 88 can be obtained. The higher the scale score, the higher the difficulty experienced.

BEHAVIORAL

Family Needs Survey (FNS)

It is a questionnaire consisting of 35 items prepared to determine the requirements. In the FNS survey; The points given to the items can be directly collected and the amount of family needs can be determined over the total score. The lowest score that can be obtained from FNS is 29 and the highest score is 87. As the scores obtained from the scale and subscales increase, it can be said that the families' level of necessity increases.

OTHER

Children's Hospital of Philadelphia Infant Test of Neuromuscular Disorders (CHOP INTEND)

CHOP-INTEND uses a scale of 0-64 points. Higher scores indicate better motor function. It is used to reliably measure natural motor function decline in infants with SMA Type 1.

OTHER

Hammersmith Functional Motor Scale Expanded (HMFSE)

It is an extended version of the 20-item HFMS. Based on another scale known as GMFM, 13 items were added and expanded HFMS to include these elements. Therefore, HFMSE is a scale used to evaluate motor functions in types 2 and 3 SMA. It contains 33 items with a total score of 66 on a scale of 0, 1, 2.

Sponsors & Collaborators

  • Marmara University

    lead OTHER

Principal Investigators

  • Naime Evrim Karadag Saygi, Prof · Department of PM&R, Marmara University School of Medicine

  • Ayca Evkaya, Res. Asst. · Department of Physiotherapy and Rehabilitation, Maltepe University

Eligibility

Min Age
1 Day
Max Age
18 Years
Sex
ALL
Healthy Volunteers
No

Timeline & Regulatory

Start
2019-07-01
Primary Completion
2020-02-28
Completion
2020-05-01

Countries

  • Turkey (Türkiye)

Study Locations

More Related Trials

Entities

Diseases

Read the full study record

This page highlights key information. For complete eligibility criteria, study locations, investigator contacts, and the full protocol, visit the original record on ClinicalTrials.gov.

View NCT04228718 on ClinicalTrials.gov