Design and Psychometric Evaluation of the Psychological Adaptation to Genetic Information Scale

Read, Catherine; Perry, Donna J.; Duffy, Mary E.

doi:10.1111/j.1547-5069.2005.00036.x

Cited by 61 publications

(74 citation statements)

References 27 publications

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“…The scale might also be relevant to other genetic areas. Issues such as self-esteem, stigma and resilience have been documented within the genetics literature and are often present among multiple inheritable conditions [23,24,32]. Future research could, for example, compare various genetic disorders to determine if there are different impacts on specific areas of self-concept among different genetic or illness diagnoses.…”

Section: Discussionmentioning

confidence: 96%

“…The very language involved in genetic counselling, such as ''mutation'', and ''abnormal gene'', suggests meanings of being ''defective'', or ''altered'', which may become internalized. The notion of a ''genetic self'' has been described by Read et al [23] and Schild [22,24] who introduced the notion of a ''genetic identity'' [23][24][25]. A qualitative study [26] found that although the majority of women carrying mutations for cancer did not report a change in lifestyle, some women experience a sense of ''living with cancer'' throughout their lifetime, and mutation-negative women described ''feeling normal for the first time''.…”

Section: Psychosocial Adjustment In Fapmentioning

confidence: 99%

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The FAP self-concept scale (adult form)

et al. 2008

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Section: Discussionmentioning

confidence: 96%

Section: Psychosocial Adjustment In Fapmentioning

confidence: 99%

The FAP self-concept scale (adult form)

et al. 2008

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“…At three months post release, surveys were sent to measure change in the participant’s responses from baseline. For those with a diagnostic result, the PAGIS [22] scale was added to measure understanding related to the new genetic information. An asymmetric crossover arm released the PGR to all enrolled participants who were in the usual care arm.…”

Section: Case Description/implementation Process or Interventionmentioning

confidence: 99%

Generation and Implementation of a Patient-Centered and Patient-Facing Genomic Test Report in the EHR

Goehringer¹,

Bonhag²,

Jones³

et al. 2018

eGEMs

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Context:Communication of genetic laboratory results to patients and providers is impeded by the complexity of results and reports. This can lead to misinterpretation of results, causing inappropriate care. Patients often do not receive a copy of the report leading to possible miscommunication. To address these problems, we conducted patient-centered research to inform design of interpretive reports. Here we describe the development and deployment of a specific patient-centered clinical decision support (CDS) tool, a multi-use patient-centered genomic test report (PGR) that interfaces with an electronic health record (EHR).Implementation Process:A PGR with a companion provider report was configured for implementation within the EHR using locally developed software (COMPASS™) to manage secure data exchange and access.Findings:We conducted semi-structured interviews with patients, family members, and clinicians that showed they sought clear information addressing findings, family implications, resources, prognosis and next steps relative to the genomic result. Providers requested access to applicable, available clinical guidelines. Initial results indicated patients and providers found the PGR contained helpful, valuable information and would provide a basis for result-related conversation between patients, providers and family.Major Themes:Direct patient involvement in the design and development of a PGR identified format and presentation preferences, and delivery of relevant information to patients and providers, prompting the creation of a CDS tool.Conclusions:Research and development of patient-centered CDS tools designed to support improved patient outcomes, are enhanced by early and substantial engagement of patients in contributing to all phases of tool design and development.

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“…Instrumento patikimumui įvertinti dažniausiai analizuojamas vertinimo skalės vidinis nuoseklumas ir logiškumas, skalės pastovumas ir stabilumas laiko atžvilgiu (3,4,(13)(14)(15)(16)(17)(18)(19).…”

Section: Tyrimo Medžiaga Ir Metodaiunclassified

“…Mažo Kronbacho alfa koeficiento problemą minėtose klasėse reikėtų spręsti patikslinant arba pakeičiant esamas teiginių formuluotes ir (ar) papildant tas klases naujais rezultatais (15). Teiginius, kurių ryšys su kitais teiginiais yra silpnas (Kronbacho a reikšmė mažesnė nei 0,35), rekomenduojama išbraukti iš instrumento (17).…”

Section: Rezultatų Aptarimasunclassified

Lithuanian version of the Nursing Outcomes Classification Use Survey: development and psychometric evaluation

Riklikienė¹,

Pukėnas

2007

Medicina

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keturių klasių vidinis nuoseklumas yra nepakankamas -a<70) ir geru stabilumu pakartotinių vertinimų (po septynių dienų) atžvilgiu (Spearmano-Browno koeficiento reikšmė visam klausimynui -0,806, o atskiroms klasėms -nuo 0,707 iki 0,970). Didžioji dauguma anketos klausimų pakankamai atspindi matuojamąjį dydį klasėje (klausimoklasės koreliacijos koeficientas didesnis kaip 0,40). Išvados. Slaugos rezultatų klasifikacijos lietuviška anketa, parengta pagal metodologinius tarptautinių instrumentų pritaikymo reikalavimus, yra patikima ir pakankamai pagrįsta, todėl tinkama naudoti slaugos rezultatų paieškai -nustatymui klinikinėje praktikoje ir slaugos mokslo tiriamiesiems darbams. Pateikiama ir naujai parengtos lietuviškos anketos tęstinių tyrimų perspektyva.Medicina (Kaunas) 2007; 43(11) SLAUGOS MOKSLASAdresas susirašinėti: O. Riklikienė, KMU Slaugos ir rūpybos katedra, Eivenių 2, 50009 Kaunas El. paštas: rikolga@hotmail.com ĮvadasProfesinė terminologija, kurios dalimi yra Slaugos rezultatų klasifikacija, leidžia slaugytojams apibrėžti veiklos tikslus ir uždavinius, pagalbos priemones ir formas, taip pat numatyti tikėtinus rezultatus.Vienintelė slaugos terminologija -"Slaugos ži-nynas" išverstas ir išleistas mūsų šalyje, yra Tarptautinės slaugos praktikos klasifikacijos (angl. International Classification for Nursing Practice -ICNP) Beta versijos pirmoji dalis, kurią 1999 m. sudarė Tarptautinės slaugytojų tarybos (angl. International Council of Nurses) Nacionalinių slaugytojų organizacijų atstovų grupė. "Slaugos žinynas" padeda geriau suvokti slaugos praktikos ir teorijos terminų reikšmę (1). Slaugos rezultatų klasifikacijos parengimas yra mė-ginimas papildyti slaugos terminologijos šaltinius lietuvių kalba ir atverti slaugytojams naujas galimybes terminais apibūdinti savo veiklą ir jos kokybę. Slaugy-

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Design and Psychometric Evaluation of the Psychological Adaptation to Genetic Information Scale

Abstract: Psychological adaptation to genetic information is a multidimensional phenomenon comprised of nonintrusiveness, support, self-worth, certainty, and self-efficacy. The PAGIS has initial reliability and validity for use in future research.

Cited by 61 publications

References 27 publications

The FAP self-concept scale (adult form)

The FAP self-concept scale (adult form)

Generation and Implementation of a Patient-Centered and Patient-Facing Genomic Test Report in the EHR

Lithuanian version of the Nursing Outcomes Classification Use Survey: development and psychometric evaluation

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