Barriers to self-administered therapy for hereditary angioedema

Linh An C. Tuong, Kirsten Olivieri, Timothy J. Craig

Research output: Contribution to journalArticle

20 Citations (Scopus)

Abstract

Presently, the movement of care for hereditary angioedema (HAE) is out of the clinic, emergency department, and hospitals and into the home. Much of the transition relies on specialized nurses who teach patients self-administration skills. Our goal was to assess nurses to uncover barriers that they have encountered in an effort to improve self-therapy education and patient care. A survey of 21 questions was sent to 38 HAE home care nurses throughout the United States. Results were collected anonymously and data were analyzed. Nurses feel that there is an increased need for teaching patients self-therapy skills. The majority are very comfortable teaching self-administration and troubleshooting-associated problems. Perceived difficulties in providing adequate teaching include distance to patient's home and logistics of coordinating, scheduling, and obtaining supplies. Teaching is preferred when done at home by a visiting nurse with a care partner available and multiple training sessions are needed. Very few patients refused self-administration after initially being taught; reasons cited for refusal include fear of injection or infection, lack of skills, interference of daily activities, and financial restraints. As for nurses, they were most worried about safety, lack of skill retention, and inappropriate use of the drug. Self- administration of HAE treatment is increasingly more accessible and should be offered to patients as a safe and practical option. The barriers to self-administration revealed in this study include distance to the patient's home, coordinating care, obtaining medications/equipment, and scheduling training sessions. Moving to self- or home treatment through nursing instruction will improve patient's independence and quality of life, lead to earlier therapy, and reduce costs associated with care.

Original languageEnglish (US)
Pages (from-to)250-254
Number of pages5
JournalAllergy and Asthma Proceedings
Volume35
Issue number3
DOIs
StatePublished - Jan 1 2014

Fingerprint

Hereditary Angioedemas
Self Administration
Teaching
Nurses
Community Health Nurses
Home Care Services
Therapeutics
Sexual Partners
Patient Education
Secondary Prevention
Fear
Hospital Emergency Service
Patient Care
Nursing
Quality of Life
Safety
Costs and Cost Analysis
Equipment and Supplies
Injections
Infection

All Science Journal Classification (ASJC) codes

  • Immunology and Allergy
  • Pulmonary and Respiratory Medicine

Cite this

Tuong, Linh An C. ; Olivieri, Kirsten ; Craig, Timothy J. / Barriers to self-administered therapy for hereditary angioedema. In: Allergy and Asthma Proceedings. 2014 ; Vol. 35, No. 3. pp. 250-254.
@article{ec4663f797a946bfb8cd0f0a46b1d17b,
title = "Barriers to self-administered therapy for hereditary angioedema",
abstract = "Presently, the movement of care for hereditary angioedema (HAE) is out of the clinic, emergency department, and hospitals and into the home. Much of the transition relies on specialized nurses who teach patients self-administration skills. Our goal was to assess nurses to uncover barriers that they have encountered in an effort to improve self-therapy education and patient care. A survey of 21 questions was sent to 38 HAE home care nurses throughout the United States. Results were collected anonymously and data were analyzed. Nurses feel that there is an increased need for teaching patients self-therapy skills. The majority are very comfortable teaching self-administration and troubleshooting-associated problems. Perceived difficulties in providing adequate teaching include distance to patient's home and logistics of coordinating, scheduling, and obtaining supplies. Teaching is preferred when done at home by a visiting nurse with a care partner available and multiple training sessions are needed. Very few patients refused self-administration after initially being taught; reasons cited for refusal include fear of injection or infection, lack of skills, interference of daily activities, and financial restraints. As for nurses, they were most worried about safety, lack of skill retention, and inappropriate use of the drug. Self- administration of HAE treatment is increasingly more accessible and should be offered to patients as a safe and practical option. The barriers to self-administration revealed in this study include distance to the patient's home, coordinating care, obtaining medications/equipment, and scheduling training sessions. Moving to self- or home treatment through nursing instruction will improve patient's independence and quality of life, lead to earlier therapy, and reduce costs associated with care.",
author = "Tuong, {Linh An C.} and Kirsten Olivieri and Craig, {Timothy J.}",
year = "2014",
month = "1",
day = "1",
doi = "10.2500/aap.2014.35.3753",
language = "English (US)",
volume = "35",
pages = "250--254",
journal = "Allergy and Asthma Proceedings",
issn = "1088-5412",
publisher = "OceanSide Publications Inc.",
number = "3",

}

Barriers to self-administered therapy for hereditary angioedema. / Tuong, Linh An C.; Olivieri, Kirsten; Craig, Timothy J.

In: Allergy and Asthma Proceedings, Vol. 35, No. 3, 01.01.2014, p. 250-254.

Research output: Contribution to journalArticle

TY - JOUR

T1 - Barriers to self-administered therapy for hereditary angioedema

AU - Tuong, Linh An C.

AU - Olivieri, Kirsten

AU - Craig, Timothy J.

PY - 2014/1/1

Y1 - 2014/1/1

N2 - Presently, the movement of care for hereditary angioedema (HAE) is out of the clinic, emergency department, and hospitals and into the home. Much of the transition relies on specialized nurses who teach patients self-administration skills. Our goal was to assess nurses to uncover barriers that they have encountered in an effort to improve self-therapy education and patient care. A survey of 21 questions was sent to 38 HAE home care nurses throughout the United States. Results were collected anonymously and data were analyzed. Nurses feel that there is an increased need for teaching patients self-therapy skills. The majority are very comfortable teaching self-administration and troubleshooting-associated problems. Perceived difficulties in providing adequate teaching include distance to patient's home and logistics of coordinating, scheduling, and obtaining supplies. Teaching is preferred when done at home by a visiting nurse with a care partner available and multiple training sessions are needed. Very few patients refused self-administration after initially being taught; reasons cited for refusal include fear of injection or infection, lack of skills, interference of daily activities, and financial restraints. As for nurses, they were most worried about safety, lack of skill retention, and inappropriate use of the drug. Self- administration of HAE treatment is increasingly more accessible and should be offered to patients as a safe and practical option. The barriers to self-administration revealed in this study include distance to the patient's home, coordinating care, obtaining medications/equipment, and scheduling training sessions. Moving to self- or home treatment through nursing instruction will improve patient's independence and quality of life, lead to earlier therapy, and reduce costs associated with care.

AB - Presently, the movement of care for hereditary angioedema (HAE) is out of the clinic, emergency department, and hospitals and into the home. Much of the transition relies on specialized nurses who teach patients self-administration skills. Our goal was to assess nurses to uncover barriers that they have encountered in an effort to improve self-therapy education and patient care. A survey of 21 questions was sent to 38 HAE home care nurses throughout the United States. Results were collected anonymously and data were analyzed. Nurses feel that there is an increased need for teaching patients self-therapy skills. The majority are very comfortable teaching self-administration and troubleshooting-associated problems. Perceived difficulties in providing adequate teaching include distance to patient's home and logistics of coordinating, scheduling, and obtaining supplies. Teaching is preferred when done at home by a visiting nurse with a care partner available and multiple training sessions are needed. Very few patients refused self-administration after initially being taught; reasons cited for refusal include fear of injection or infection, lack of skills, interference of daily activities, and financial restraints. As for nurses, they were most worried about safety, lack of skill retention, and inappropriate use of the drug. Self- administration of HAE treatment is increasingly more accessible and should be offered to patients as a safe and practical option. The barriers to self-administration revealed in this study include distance to the patient's home, coordinating care, obtaining medications/equipment, and scheduling training sessions. Moving to self- or home treatment through nursing instruction will improve patient's independence and quality of life, lead to earlier therapy, and reduce costs associated with care.

UR - http://www.scopus.com/inward/record.url?scp=84899866192&partnerID=8YFLogxK

UR - http://www.scopus.com/inward/citedby.url?scp=84899866192&partnerID=8YFLogxK

U2 - 10.2500/aap.2014.35.3753

DO - 10.2500/aap.2014.35.3753

M3 - Article

C2 - 24801468

AN - SCOPUS:84899866192

VL - 35

SP - 250

EP - 254

JO - Allergy and Asthma Proceedings

JF - Allergy and Asthma Proceedings

SN - 1088-5412

IS - 3

ER -