Cystic Fibrosis Foundation and European Cystic Fibrosis Society Survey of cystic fibrosis mental health care delivery

Abbott, Janice; Elborn, J. Stuart; Georgiopoulos, Anna M.; Goldbeck, Lutz; Marshall, Bruce C.; Sabadosa, Kathryn A.; Smith, Beth A.; Quittner, A.L.

doi:10.1016/j.jcf.2014.12.015

Cited by 45 publications

(44 citation statements)

References 22 publications

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“…People with CF are able to set and achieve major life milestones including education, marriage, and having children. Mental health issues including depression and anxiety are common (Abbott et al 2015). Despite advances in the outlook for affected individuals, there is still no known cure for the condition.…”

Section: Treatment and Disease Managementmentioning

confidence: 99%

Attitudes Toward Discussing Approved and Investigational Treatments for Cystic Fibrosis in Prenatal Genetic Counseling Practice

Elsas

Schwind

Hercher

et al. 2016

Journal of Genetic Counseling

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This project aimed to explore the attitudes of prenatal genetic counselors toward discussion of novel approved and experimental CF treatments in the prenatal setting, and to assess how knowledge of genotype-specific, targeted treatments may influence their current practices. Targeted treatments have the potential to impact the health-related quality of life of individuals affected with CF and therefore, knowledge of the availability of such treatments may influence the decision-making process of parents who receive a fetal diagnosis of CF. Using the 2012 FDA approval and introduction of ivacaftor into CF clinical practice as a case study, a survey was designed to explore the opinions and practices of prenatal genetic counselors with regard to counseling for a prenatal diagnosis of CF, and how those practices might be impacted by the availability of a new genotype-specific treatment. Approximately 800 genetic counselors were sent questionnaires in January of 2013. Respondents were provided information about this treatment and were asked to rate its perceived benefits, along with the likelihood that they would discuss potential benefits and limitations with parents receiving a prenatal diagnosis of CF. One-hundred sixty-nine prenatal genetic counselors (21.1 %) responded to the survey. Results indicated that 80 % of respondents 'never heard of the drug', or they were 'not exactly sure' what it was. After reading the materials provided, counselors felt the new treatment would have 'some' or a 'significant' impact on an affected individual's life. Their opinions varied on what information about this treatment they would choose to discuss with their patients; even if the treatment is currently FDA approved and clinically available for affected individuals with the genotype of the fetus. However, they would 'definitely' refer these patients to a specialist to discuss targeted treatments further. Most prenatal genetic counselors indicated there are certain scenarios in the prenatal setting which warrant a discussion of targeted treatments for CF, at least on some level. Counselor's views on sharing information about new treatment options are shaped by their familiarity with the treatment and their perception of its benefits and limitations, their comfort discussing these subjects, and their interpretation of the genetic counselor's role. Most genetic counselors had never heard of ivacaftor or Kalydeco™ prior to taking the survey. Therefore, counselors need to be better educated about the availability of CFTR mutation-based treatments before they will be able to incorporate discussion of new treatment options into their counseling.

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Section: Treatment and Disease Managementmentioning

confidence: 99%

Attitudes Toward Discussing Approved and Investigational Treatments for Cystic Fibrosis in Prenatal Genetic Counseling Practice

Elsas

Schwind

Hercher

et al. 2016

Journal of Genetic Counseling

View full text Add to dashboard Cite

show abstract

“…The prevalence of depression and anxiety is high in patients with CF as well as their caregivers; thus, screening, interventions, pharmacologic treatment, and future research in this area should be prioritized. A survey showed that mental health screening was supported in US and European CF Centers, but was inadequate and highly variable, underscoring the need for standardized instruments and attention to barriers in implementation . The International Committee on Mental Health in CF published a consensus statement for screening and treating depression and anxiety.…”

Section: Multi‐system Comorbiditiesmentioning

confidence: 99%

“…A survey showed that mental health screening was supported in US and European CF Centers, but was inadequate and highly variable, underscoring the need for standardized instruments and attention to barriers in implementation. 48 The International Committee on Mental Health in CF published a consensus statement for screening and treating depression and anxiety. Highlights include education and supportive measures toward prevention, minimization of distress with medical procedures, and screening of patients and caregivers with referral for evidence-based psychological interventions, exposurebased cognitive behavioral therapy, or consideration of antidepressants.…”

Section: Mental Healthmentioning

confidence: 99%

Pediatric Pulmonologyyear in review 2015: Part 4

Savant

McColley

2016

Pediatr Pulmonol.

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“…A recent survey of CF providers across Europe and the USA indicated that at least 48 different screening measures of psychological distress are in use. 7 Thus, standardisation of this assessment process is needed.…”

Section: Dear Editorsmentioning

confidence: 99%

Letter to the editor: authors’ response

Quittner

Barker

Goldbeck

et al. 2015

Thorax

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Cystic Fibrosis Foundation and European Cystic Fibrosis Society Survey of cystic fibrosis mental health care delivery

Abstract: These data have informed the decision-making, dissemination and implementation strategies of the Mental Health Guidelines Committee sponsored by the CFF and ECFS.

Cited by 45 publications

References 22 publications

Attitudes Toward Discussing Approved and Investigational Treatments for Cystic Fibrosis in Prenatal Genetic Counseling Practice

Attitudes Toward Discussing Approved and Investigational Treatments for Cystic Fibrosis in Prenatal Genetic Counseling Practice

Pediatric Pulmonologyyear in review 2015: Part 4

Letter to the editor: authors’ response

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