Journal of Community Health Research
مجله تحقیقات سلامت
JCHR
Medical Sciences
http://jhr.ssu.ac.ir
1
admin
2322-5688
2345-2609
27545
12727
en
jalali
1396
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1
gregorian
2018
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1
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online
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fulltext
en
بسمت پرونده الکترونیک سلامت فردی: طراحی مجموعه حداقل داده ها برای بیماران تالاسمی ماژور
Designing a Minimum Data Set for Major Thalassemia Patients: Towards Electronic Personal Health Record
مدیریت اطلاعات بهداشتی
Health information management
پژوهشي
Research
<p class="MsoNormal" dir="RTL" style="margin-top:0cm;margin-right:2.4pt;margin-bottom:
0cm;margin-left:0cm;margin-bottom:.0001pt;text-align:right;text-indent:1.0cm;
line-height:normal;mso-layout-grid-align:none;text-autospace:none;direction:
rtl;unicode-bidi:embed"><span b="" lang="AR-SA" mso-themecolor:="" style="font-size:12.0pt;font-family:
">زمینه و هدف:</span><span class="hps"><span b="" lang="AR-SA" mso-bidi-language:="" style="font-family:"> </span></span><span b="" lang="FA" style="font-size:12.0pt;font-family:">در پزشکی پیشرفته، داده های زیادی تولید می گردد اما همواره بین گردآوری و درک و تفسیر آن فاصله عمیقی وجود دارد. بدین جهت مجموعه حداقل داده ها تهیه می شوند</span><span b="" dir="LTR" mso-bidi-language:="" style="font-size:12.0pt;mso-bidi-font-family:">.</span><span b="" style="font-size:12.0pt;font-family:"> </span><span b="" lang="AR-SA" mso-ascii-font-family:="" style="font-size:12.0pt;font-family:">تالاسمی</span><span b="" dir="LTR" lang="AR-SA" style="font-size:
12.0pt;font-family:"> </span><span b="" lang="AR-SA" style="font-size:
12.0pt;font-family:">ماژور</span><span b="" dir="LTR" lang="AR-SA" style="font-size:
12.0pt;font-family:"> </span><span b="" lang="AR-SA" style="font-size:
12.0pt;font-family:">یک</span><span b="" dir="LTR" lang="AR-SA" style="font-size:
12.0pt;font-family:"> </span><span b="" lang="AR-SA" style="font-size:
12.0pt;font-family:">بیماری</span><span b="" dir="LTR" lang="AR-SA" style="font-size:
12.0pt;font-family:"> </span><span b="" lang="AR-SA" style="font-size:
12.0pt;font-family:">خونی</span><span b="" dir="LTR" lang="AR-SA" style="font-size:
12.0pt;font-family:"> </span><span b="" lang="AR-SA" style="font-size:
12.0pt;font-family:">ژنتیکی</span><span b="" dir="LTR" lang="AR-SA" style="font-size:
12.0pt;font-family:"> </span><span b="" lang="AR-SA" style="font-size:
12.0pt;font-family:">مزمن و شایع ترین اختلال ژنتیکی در جهان می باشد.</span><span b="" lang="FA" style="font-size:12.0pt;
font-family:"> هدف این پژوهش تعیین مجموعه داده ها برای پرونده سلامت فردی بیماران تالاسمی ماژور است.</span></p>
<span b="" color:="" lang="AR-SA" style="text-align: right; text-indent: 1cm; font-size: 12pt; font-family: ">روش ها : </span><span class="hps" style="text-align: right; text-indent: 1cm;"><span b="" lang="FA" style="font-family:">پژوهش حاضر کاربردی بوده که </span></span><span b="" font-style:="" style="font-family: " text-align:="" text-indent:="">به صورت توصیفی و به روش دلفی انجام شد. پژوهش </span><span b="" font-style:="" style="font-family: " text-align:="" text-indent:="">به منظور تعیین مجموعه داده های پرونده سلامت فردی بیماران تالاسمی، ابتدا پرونده </span><span b="" font-style:="" style="font-family: " text-align:="" text-indent:="">های سلامت دستی بیماران تالاسمی ماژور براساس فرم های کاغذی استاندارد وزارت </span><span class="hps" style="text-align: right; text-indent: 1cm;"><span b="" lang="FA" style="font-family:">بهداشت بررسی شدند و اطلاعات لازم براساس چک لیست جمع آوری شد. </span></span><span b="" lang="FA" style="text-align: right; text-indent: 1cm; font-size: 12pt; font-family: ">پرسشنامه </span><span b="" lang="FA" style="text-align: right; text-indent: 1cm; font-size: 12pt; font-family: ">در مرحله اول توسط یک تیم 6 نفره </span><span b="" lang="FA" style="text-align: right; text-indent: 1cm; font-size: 12pt; font-family: ">بازبینی گردید و </span><span b="" lang="FA" style="text-align: right; text-indent: 1cm; font-size: 12pt; font-family: ">روایی </span><span b="" lang="FA" style="text-align: right; text-indent: 1cm; font-size: 12pt; font-family: ">محتوایی آن توسط این تیم </span><span b="" lang="FA" style="text-align: right; text-indent: 1cm; font-size: 12pt; font-family: ">تعیین گردید </span><span b="" lang="FA" style="text-align: right; text-indent: 1cm; font-size: 12pt; font-family: ">و پایایی </span><span b="" lang="FA" style="text-align: right; text-indent: 1cm; font-size: 12pt; font-family: ">آن با الفای کرونباخ 96% تعیین شد. </span><span class="hps" style="text-align: right; text-indent: 1cm;"><span b="" lang="FA" style="font-family:">سپس پرسشنامه پژوهشگر ساخته </span></span><span b="" font-size:="" font-style:="" style="font-family: " text-align:="" text-indent:="">تهیه و بین 113 نفر از متخصصان خون و آنکلوژی کشور به </span><span b="" font-size:="" font-style:="" style="font-family: " text-align:="" text-indent:="">نظرسنجی گذاشته شد.</span> <p class="MsoNormal" dir="RTL" style="margin-top:0cm;margin-right:2.4pt;margin-bottom:
0cm;margin-left:0cm;margin-bottom:.0001pt;text-align:right;text-indent:1.0cm;
line-height:normal;mso-layout-grid-align:none;text-autospace:none;direction:
rtl;unicode-bidi:embed"></p>
<p class="MsoNormal" dir="RTL" style="margin-top:0cm;margin-right:2.4pt;margin-bottom:
0cm;margin-left:0cm;margin-bottom:.0001pt;text-align:justify;text-indent:1.0cm;
line-height:normal;mso-layout-grid-align:none;text-autospace:none;direction:
rtl;unicode-bidi:embed"><span b="" lang="AR-SA" mso-themecolor:="" style="font-size:12.0pt;font-family:
">یافته ها: </span><span b="" lang="FA" style="font-size:
12.0pt;font-family:">. از بین 126 عنصر اطلاعاتی که به نظر سنجی گذاشته شد 117 عنصر اطلاعاتی با موافقت بیشتر از 75 درصد در محدوده زیاد و خیلی زیاد به عنوان عناصر اصلی و 9 عنصر با موافقت کمتر از 50 درصد در محدوده کم و خیلی کم از لیست عناصر پرونده الکترونیک سلامت فردی بیماران تالاسمی حذف شدند. عنصر اطلاعاتی با موافقت بین 50 تا 75 درصد در محدوده متوسط تا زیاد در نظرسنجی مشاهده نشد. </span><span b="" lang="AR-SA" mso-themecolor:="" style="font-size:12.0pt;font-family:
">حداقل عناصر اطلاعاتی پرونده سلامت فردی بیماران تالاسمی ماژور</span><span class="hps"><span b="" lang="FA" style="font-family:"> در 9 گروه اطلاعات دموگرافیک، اطلاعات تاریخچه سلامت، </span></span><span b="" lang="FA" style="font-size:12.0pt;font-family:">اطلاعات ارزیابی، اطلاعات آزمایشگاهی، اطلاعات دارویی، تزریق خون، آزمایشات بدنی، واکسیناسیون، دندان پزشکی ارائه شد.</span></p>
<p class="MsoNormal" dir="RTL" style="margin-top:0cm;margin-right:2.4pt;margin-bottom:
0cm;margin-left:0cm;margin-bottom:.0001pt;text-align:justify;text-indent:1.0cm;
line-height:normal;mso-layout-grid-align:none;text-autospace:none;direction:
rtl;unicode-bidi:embed"><span b="" lang="FA" style="font-size:12.0pt;font-family:">بحث و نتیجه گیری</span><span b="" lang="FA" style="font-size:12.0pt;
font-family:">: در این مطالعه مجموعه حداقل داده های پرونده الکترونیک سلامت فردی بیماران تالاسمی ماژ.ر تعریف شده است. این عناصر اطلاعاتی به عنوان </span><span class="fontstyle01"><span b="" lang="AR-SA" style="font-size:12.0pt;font-family:">مجموعه</span></span><span class="fontstyle01"><span b="" lang="AR-SA" style="font-size:12.0pt;font-family:"> </span></span><span class="fontstyle01"><span b="" lang="AR-SA" style="font-size:12.0pt;font-family:">ی مناسبی برای درج در سیستم</span></span><span class="fontstyle01"><span b="" lang="AR-SA" style="font-size:12.0pt;font-family:"> </span></span><span class="fontstyle01"><span b="" lang="AR-SA" style="font-size:12.0pt;font-family:">هـای دسـتی و</span></span><span class="fontstyle01"><span b="" lang="AR-SA" mso-bidi-language:="" style="font-size:12.0pt;font-family:"> </span></span><span class="fontstyle01"><span b="" lang="AR-SA" style="font-size:
12.0pt;font-family:">پرونده</span></span><span class="fontstyle01"><span b="" lang="AR-SA" style="font-size:12.0pt;font-family:"> </span></span><span class="fontstyle01"><span b="" lang="AR-SA" style="font-size:12.0pt;font-family:">های پزشکی الکترونیکی به شـمار مـی</span></span><span class="fontstyle01"><span b="" lang="AR-SA" mso-bidi-language:="" style="font-size:12.0pt;font-family:"> </span></span><span class="fontstyle01"><span b="" lang="AR-SA" style="font-size:
12.0pt;font-family:">آینـد</span></span><span class="fontstyle01"><span b="" style="font-size:12.0pt;font-family:">.</span></span><span class="fontstyle01"><span b="" style="font-size:12.0pt;font-family:"> </span></span><span class="fontstyle01"><span b="" lang="AR-SA" style="font-size:12.0pt;font-family:">و می توانند باتوجه به نیازهای </span></span><span class="fontstyle01"><span b="" lang="FA" style="font-size:12.0pt;font-family:">بیماران </span></span><span class="fontstyle01"><span b="" lang="AR-SA" style="font-size:12.0pt;font-family:">تغییرات لازم انجام شود و به عنوان یـک سـند</span></span><span class="fontstyle01"><span b="" lang="AR-SA" style="font-size:12.0pt;font-family:"> </span></span><span class="fontstyle01"><span b="" lang="AR-SA" style="font-size:12.0pt;font-family:">ملی مورد استفاده قرار گیرد</span></span><span class="fontstyle01"><span b="" lang="FA" style="font-size:12.0pt;font-family:">.</span></span></p>
<p class="MsoNormal" dir="RTL" style="margin-top:0cm;margin-right:2.4pt;margin-bottom:
0cm;margin-left:0cm;margin-bottom:.0001pt;text-align:justify;text-indent:1.0cm;
line-height:normal;mso-layout-grid-align:none;text-autospace:none;direction:
rtl;unicode-bidi:embed"><span b="" lang="AR-SA" mso-themecolor:="" style="font-size:12.0pt;font-family:
"> </span></p>
<p class="MsoNormal" style="margin-bottom:0cm;margin-bottom:.0001pt;text-align:
justify;line-height:150%;tab-stops:7.0cm;direction:ltr;unicode-bidi:embed"><span new="" style="font-size:12.0pt;
line-height:150%;font-family:" times=""><strong>Introduction</strong>:<span dir="RTL"> </span>In advanced medicine, large amounts of data are produced. However, there is always a gap between their collection and their understanding and interpretation. Thus, the minimum data sets are prepared. Thalassemia major is a chronic genetic blood disorder and the most common genetic disorder in the world. So, the aim of this study was to determine the data set for personal health record of patients with major thalassemia<span dir="RTL" lang="FA">.</span></span></p>
<p class="MsoNormal" style="text-align:justify;line-height:150%;direction:ltr;
unicode-bidi:embed"><strong><span class="fontstyle01"><span new="" style="font-size:12.0pt;
line-height:150%;font-family:" times="">Methods: </span></span></strong><span new="" style="font-size:12.0pt;line-height:150%;font-family:" times="">This present applied research was done descriptively by Delphi method. To determine the dataset<span dir="RTL" lang="FA">,</span> the manual health records of thalassemia major patients were first evaluated based on the standard paper forms of the Ministry of Health, and the data required were collected according to the checklist<span dir="RTL" lang="FA" style="background:white;mso-shading-themecolor:background1">.</span><span style="background:white;mso-shading-themecolor:background1"> The questionnaire w first reviewed by a 6-expert team. Its content validity was determined by the team and its reliability by Cronbach's alpha as 96%. Then, a researcher-made questionnaire was prepared and surveyed among 113 experts on blood</span> and oncology specialists around the country (Iran).</span></p>
<p class="MsoNormal" style="margin-bottom:0cm;margin-bottom:.0001pt;text-align:
justify;line-height:150%;direction:ltr;unicode-bidi:embed"><span class="fontstyle01"><span new="" style="font-size:12.0pt;line-height:150%;font-family:
" times=""><strong>Results</strong>:</span></span><span new="" style="font-size:12.0pt;
line-height:150%;font-family:" times=""> from the 126 information element data surveyed, 117 IEDs were identified as the main elements with the agreement of more than 75% in the range of high and very high, while nine elements with the agreement of less than 50% in the range of low and very low were excluded from the elements list of personal health records of thalassemia patients. The information element data with the agreement of 50 to 75 in the range of moderate to high was not found in the survey. Finally, the minimum data set of individual health records of patients with thalassemia major was provided in 9 groups of demographic information, health history information, assessment information<span dir="RTL" lang="FA">, </span>laboratory data, drug information, blood transfusion<span dir="RTL" lang="FA">, </span>physical examinations, immunization (vaccination) and dental care.</span></p>
<p class="MsoNormal" style="margin-bottom:0cm;margin-bottom:.0001pt;text-align:
justify;line-height:150%;direction:ltr;unicode-bidi:embed"><strong><span class="fontstyle01"><span new="" style="font-size:12.0pt;line-height:150%;font-family:
" times="">Conclusion</span></span></strong><span new="" style="font-size:
12.0pt;line-height:150%;font-family:" times="">: In this study, the data elements were defined for personal health record of thalassemia patients. These data elements are considered as an appropriate data set for inclusion in the manual systems and electronic medical records and based on the </span><span new="" style="font-size:12.0pt;line-height:150%;font-family:" times="">p</span><span new="" style="font-size:12.0pt;line-height:
150%;font-family:" times="">atients' needs</span><span new="" style="font-size:12.0pt;line-height:150%;font-family:" times=""> can be changed</span><span new="" style="font-size:12.0pt;
line-height:150%;font-family:" times=""> to be used as a national document.</span></p>
حداقل مجموعه داده ها, عناصر اطلاعاتی, پرونده الکترونیک سلامت فردی, بیماری تالاسمی
Minimum data sets, data elements, Personal health record, Electronic Personal Health Record, Thalassemia
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http://jhr.ssu.ac.ir/browse.php?a_code=A-10-1262-1&slc_lang=en&sid=1
Khadije
Moeil Tabaghdehi
خدیجه
معیل طبقدهی
khadije_moeil67@yahoo.com