What defines a pulmonary exacerbation? The perceptions of adults with cystic fibrosis

Abbott, Janice; Holt, Alison; Hart, Anna; Morton, Alison; MacDougall, L.; Pogson, M.; Milne, G.; Rodgers, Helen; Conway, S.P.

doi:10.1016/j.jcf.2009.07.003

Cited by 39 publications

(56 citation statements)

References 14 publications

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“…Researchers previously reported that patients with other conditions detected improvements following treatment more easily than deterioration. Patients reported that they often did not realize how much they had deteriorated until they started to improve 38. This recognition is an encouraging finding, especially when the LupusQoL is recommended for use in clinical trials.…”

Section: Discussionmentioning

confidence: 90%

Sensitivity to Change and Minimal Important Differences of the LupusQoL in Patients With Systemic Lupus Erythematosus

McElhone

Abbott

Sutton

et al. 2016

Arthritis Care & Research

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ObjectiveAs a health‐related quality of life (HRQOL) measure, the LupusQoL is a reliable and valid measure for adults with systemic lupus erythematosus (SLE). This study evaluates the responsiveness and minimal important differences (MIDs) for the 8 LupusQoL domains.MethodsPatients experiencing a flare were recruited from 9 UK centers. At each of the 10 monthly visits, HRQOL (LupusQoL, Short Form 36 health survey [SF‐36]), global rating of change (GRC), and disease activity using the British Isles Lupus Assessment Group 2004 index were assessed. The responsiveness of the LupusQoL and the SF‐36 was evaluated primarily when patients reported an improvement or deterioration on the GRC scale and additionally with changes in physician‐reported disease activity. MIDs were estimated as mean changes when minimal change was reported on the GRC scale.ResultsA total of 101 patients were recruited. For all LupusQoL domains, mean HRQOL worsened when patients reported deterioration and improved when patients reported an improvement in GRC; SF‐36 domains showed comparable responsiveness. Improvement in some domains of the LupusQoL/SF‐36 was observed with a decrease in disease activity, but when disease activity worsened, there was no significant change. LupusQoL MID estimates for deterioration ranged from −2.4 to −8.7, and for improvement from 3.5 to 7.3; for the SF‐36, the same MID estimates were −2.0 to −11.1 and 2.8 to 10.9, respectively.ConclusionAll LupusQoL domains are sensitive to change with patient‐reported deterioration or improvement in health status. For disease activity, some LupusQoL domains showed responsiveness when there was improvement but none for deterioration. LupusQoL items were derived from SLE patients and provide the advantage of disease‐specific domains, important to the patients, not captured by the SF‐36.

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Section: Discussionmentioning

confidence: 90%

Sensitivity to Change and Minimal Important Differences of the LupusQoL in Patients With Systemic Lupus Erythematosus

McElhone

Abbott

Sutton

et al. 2016

Arthritis Care & Research

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“…For example, the Asthma Control Questionnaire incorporates patient's views on whether their asthma is under control as well an objective measurement of peak respiratory flow rate [30]. Any new tool should consider that different indicators of a PEX may be associated with different degrees of disease severity and also different severities of exacerbation [16].…”

Section: Discussionmentioning

confidence: 99%

“…The themes were built further through the results of patient interviews with 47 adults with CF to identify their perception of the indicators of an exacerbation and a review of CF specific quality of life instruments [16,26,27]. While these questionnaires are assessing quality of life, they contain signs, symptoms and feelings that are related to people with CF and are used in clinical trials and in clinical practice to help identify the health status of patients which were not already covered by the themes identified.…”

Section: Delphi Round 0: Statement Generationmentioning

confidence: 99%

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Indicators of pulmonary exacerbation in cystic fibrosis: A Delphi survey of patients and health professionals

McCourt

O’Neill

Logan

et al. 2015

Journal of Cystic Fibrosis

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“…[8] As with many chronic illnesses, the severity of CF progresses from mild to moderate to severe as time passes. [9] The physical manifestations and functional limitations of CF become more noticeable during adolescence. [8] Therefore, it is a critical period when health issues can become magnified.…”

Section: Top Health Concernsmentioning

confidence: 99%

A day in the life of an adolescent female with cystic fibrosis and the role of the advanced practice nurse: A case study

Ladores

Bray

2016

JNEP

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Cystic fibrosis (CF) is no longer considered a disease of childhood as life expectancy is continuously increasing. It is still a chronic life-limiting disease that presents unique physiological and psychological challenges to the adolescent who has it. Adolescence is a period of turbulence for teens with CF who face the primary issues of pulmonary exacerbations, complex medication and nutritional regimens, altered growth and development, and transition to adult health care. A pseudo-case study of a young adolescent girl with CF is presented to provide insight into the daily struggles that adolescents with CF undertake. The roles of the advanced practice nurse (APN) as clinician, case manager, and educator are highlighted in the provision of age-appropriate care.

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What defines a pulmonary exacerbation? The perceptions of adults with cystic fibrosis

Abstract: These preliminary data suggest that patient-reported indicators of a pulmonary exacerbation may not be the same for all adults with CF. Whether different indicators are associated with specific demographic or clinical variables remains to be evaluated.

Cited by 39 publications

References 14 publications

Sensitivity to Change and Minimal Important Differences of the LupusQoL in Patients With Systemic Lupus Erythematosus

Sensitivity to Change and Minimal Important Differences of the LupusQoL in Patients With Systemic Lupus Erythematosus

Indicators of pulmonary exacerbation in cystic fibrosis: A Delphi survey of patients and health professionals

A day in the life of an adolescent female with cystic fibrosis and the role of the advanced practice nurse: A case study

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