What Do Adults Want in a Cystic Fibrosis Center?...An Assessment of Needs in the Adult CF Population

2.50
Hdl Handle:
http://hdl.handle.net/10755/148521
Type:
Presentation
Title:
What Do Adults Want in a Cystic Fibrosis Center?...An Assessment of Needs in the Adult CF Population
Abstract:
What Do Adults Want in a Cystic Fibrosis Center?...An Assessment of Needs in the Adult CF Population
Conference Sponsor:Sigma Theta Tau International
Conference Year:2001
Conference Date:November 10 - 14, 2001
Author:VandenBranden, Stacy
P.I. Institution Name:Lutheran General Hospital
Problem: Improved treatment for those with Cystic Fibrosis (CF) has led to an increased median life expectancy of over 30 years for affected individuals. Today, adults with CF account for approximately 40% of the entire CF population. With this in mind, there is an increased focus on developing adult CF Centers to meet the unique needs of this population. However, many adults with CF are still cared for in pediatric facilities or in adult facilities with a model of care that is unchanged from the interdisciplinary pediatric model. And while adults with CF are encouraged to make thoughtful and educated choices about their care, adult CF centers have been developed with minimal input from the adults, themselves. Further, little research has been done to explore the aspects of care that are most valued by adults with CF. The purpose of this study was to examine the needs and perspectives of adults with CF who are cared for at one adult CF Center in the Midwestern United States. Specific aims were to examine the views of adults on the utilization, availability, and perceived importance of the services and disciplines that are currently a part of the adult program. Methods: A survey was mailed to 46 adult patients with CF who had utilized adult CF services in the past two years. The survey was developed with input from the interdisciplinary adult CF team, and was reviewed by individuals with expertise in survey research. The survey includes forced-choice and open-ended items in the following areas: demographic characteristics, health status, ambulatory and in-patient services, and educational needs. For each service area, 3 dimensions were assessed: 1) utilization, 2) perceived availability, and 3) importance to the respondent. Each dimension was assessed using a 5-point Likert scale, with 1 indicating “little” and 5 indicating “much”. A stamped return envelope was included in the initial mailing, and follow-up letters were sent at 2 and 4 weeks after the initial mailing to optimize the response rate. Analysis: Descriptive statistics were used to examine respondent characteristics, patterns of CF center utilization, and valued aspects of care. Correlational statistics were used to explore potenti8al relationships between utilization, importance, and availability of services, disease severity, marital status and gender. Open-ended responses were evaluated through coding using paired comparisons for qualitative data. Codes were developed and confirmed by this investigator and a nurse scientist with expertise in qualitative research and care of persons with CF. Similar codes were collapsed into categories. Results: A total of 31 adults (67%) responded to the survey. The mean age of respondents was 30.1 years (+8.1) with a range of 19-46 years. Respondents had been receiving care at the adult CF clinic for 1 – 14 years, with a mean of 5.4 years (+3.6). Forty-eight percent of respondents indicated co-diagnoses, with CF-related diabetes (16%), asthma (13%), and ABPA (6%) most frequently reported. Three respondents (10%) had undergone lung transplantation. Only 1/3 of adults (11; 36%) visited the CF Center / physician on a quarterly basis. Most made visits for regular monitoring (16; 52%), however, 42% (n=13) came in only when they were feeling ill. When asked about the 3 most valued aspects of CF Center care, over half of the adults (17; 55%) named their relationship with the CF physician, followed by quality care (10; 32%), and their relationship with the CF nurses (6;20%). The least liked aspects of Center care included the inconvenience of appointments 10; 32%) and concerns about inpatient hospital staff’s knowledge/experience with CF (7; 23%). Adults with CF express a high interest in learning about treatments and research such as genetics. Nursing Implications: Developing and maintaining adult CF care centers is a relatively new venture as this first generation of individuals with CF lives well into adulthood. It is important for nurses involved in the implementation of CF care centers to recognize and address the unique needs and perspectives of adults with CF, while maintaining quality standards of care for this population. In addition, the results of this research can guide the nurse in providing education to the adult CF population on the purpose and benefits of multidisciplinary CF care.
Repository Posting Date:
26-Oct-2011
Date of Publication:
10-Nov-2001
Sponsors:
Sigma Theta Tau International

Full metadata record

DC FieldValue Language
dc.typePresentationen_GB
dc.titleWhat Do Adults Want in a Cystic Fibrosis Center?...An Assessment of Needs in the Adult CF Populationen_GB
dc.identifier.urihttp://hdl.handle.net/10755/148521-
dc.description.abstract<table><tr><td colspan="2" class="item-title">What Do Adults Want in a Cystic Fibrosis Center?...An Assessment of Needs in the Adult CF Population</td></tr><tr class="item-sponsor"><td class="label">Conference Sponsor:</td><td class="value">Sigma Theta Tau International</td></tr><tr class="item-year"><td class="label">Conference Year:</td><td class="value">2001</td></tr><tr class="item-conference-date"><td class="label">Conference Date:</td><td class="value">November 10 - 14, 2001</td></tr><tr class="item-author"><td class="label">Author:</td><td class="value">VandenBranden, Stacy</td></tr><tr class="item-institute"><td class="label">P.I. Institution Name:</td><td class="value">Lutheran General Hospital</td></tr><tr class="item-email"><td class="label">Email:</td><td class="value">stacy.vandenbranden@advocatehe</td></tr><tr><td colspan="2" class="item-abstract">Problem: Improved treatment for those with Cystic Fibrosis (CF) has led to an increased median life expectancy of over 30 years for affected individuals. Today, adults with CF account for approximately 40% of the entire CF population. With this in mind, there is an increased focus on developing adult CF Centers to meet the unique needs of this population. However, many adults with CF are still cared for in pediatric facilities or in adult facilities with a model of care that is unchanged from the interdisciplinary pediatric model. And while adults with CF are encouraged to make thoughtful and educated choices about their care, adult CF centers have been developed with minimal input from the adults, themselves. Further, little research has been done to explore the aspects of care that are most valued by adults with CF. The purpose of this study was to examine the needs and perspectives of adults with CF who are cared for at one adult CF Center in the Midwestern United States. Specific aims were to examine the views of adults on the utilization, availability, and perceived importance of the services and disciplines that are currently a part of the adult program. Methods: A survey was mailed to 46 adult patients with CF who had utilized adult CF services in the past two years. The survey was developed with input from the interdisciplinary adult CF team, and was reviewed by individuals with expertise in survey research. The survey includes forced-choice and open-ended items in the following areas: demographic characteristics, health status, ambulatory and in-patient services, and educational needs. For each service area, 3 dimensions were assessed: 1) utilization, 2) perceived availability, and 3) importance to the respondent. Each dimension was assessed using a 5-point Likert scale, with 1 indicating &ldquo;little&rdquo; and 5 indicating &ldquo;much&rdquo;. A stamped return envelope was included in the initial mailing, and follow-up letters were sent at 2 and 4 weeks after the initial mailing to optimize the response rate. Analysis: Descriptive statistics were used to examine respondent characteristics, patterns of CF center utilization, and valued aspects of care. Correlational statistics were used to explore potenti8al relationships between utilization, importance, and availability of services, disease severity, marital status and gender. Open-ended responses were evaluated through coding using paired comparisons for qualitative data. Codes were developed and confirmed by this investigator and a nurse scientist with expertise in qualitative research and care of persons with CF. Similar codes were collapsed into categories. Results: A total of 31 adults (67%) responded to the survey. The mean age of respondents was 30.1 years (+8.1) with a range of 19-46 years. Respondents had been receiving care at the adult CF clinic for 1 &ndash; 14 years, with a mean of 5.4 years (+3.6). Forty-eight percent of respondents indicated co-diagnoses, with CF-related diabetes (16%), asthma (13%), and ABPA (6%) most frequently reported. Three respondents (10%) had undergone lung transplantation. Only 1/3 of adults (11; 36%) visited the CF Center / physician on a quarterly basis. Most made visits for regular monitoring (16; 52%), however, 42% (n=13) came in only when they were feeling ill. When asked about the 3 most valued aspects of CF Center care, over half of the adults (17; 55%) named their relationship with the CF physician, followed by quality care (10; 32%), and their relationship with the CF nurses (6;20%). The least liked aspects of Center care included the inconvenience of appointments 10; 32%) and concerns about inpatient hospital staff&rsquo;s knowledge/experience with CF (7; 23%). Adults with CF express a high interest in learning about treatments and research such as genetics. Nursing Implications: Developing and maintaining adult CF care centers is a relatively new venture as this first generation of individuals with CF lives well into adulthood. It is important for nurses involved in the implementation of CF care centers to recognize and address the unique needs and perspectives of adults with CF, while maintaining quality standards of care for this population. In addition, the results of this research can guide the nurse in providing education to the adult CF population on the purpose and benefits of multidisciplinary CF care.</td></tr></table>en_GB
dc.date.available2011-10-26T09:46:24Z-
dc.date.issued2001-11-10en_GB
dc.date.accessioned2011-10-26T09:46:24Z-
dc.description.sponsorshipSigma Theta Tau Internationalen_GB
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