Journal of Cystic Fibrosis 14 (2015) e33–e34 www.elsevier.com/locate/jcf

Letter to the Editor

The ideal and the real world of mental health care delivery Gerald Ullrich ⁎, Gratiana Steinkamp, Katja Stahl Reutzstraße 1, 19055 Schwerin, Germany Received 6 May 2015; revised 27 May 2015; accepted 28 May 2015 Available online 11 June 2015

According to a European Consensus, mental health care should be an integral component of CF centre care [1]. Abbott et al. surveyed CF health care professionals in Europe (n = 627) and in the US (n = 618) whether their patients receive regular mental health screening, and how members in their team address mental health issues. This web-based survey [2] revealed that the majority of respondents (73%) had no personal experience with mental health screening. Those who did used well-established instruments. In addition, about one third of respondents from Europe were unable or unsure if they could refer to mental health care clinicians in their hospital. Even though screening itself may not yet be called health care, the current data tell us about the inadequate state of mental care delivery in CF centres. The data raise doubts if mental health problems of CF patients are properly dealt with, whether noticed by screening or because symptoms and problems have occurred during routine care. While the European standards expect psychologists to be part of the CF-team, Abbott et al. reported that 39% of CF professionals in Europe not even had “up-to-date lists of mental health resources and referrals to provide to patients and families”. This is in contrast to an earlier survey, where 80% of respondents indicated “good” access to healthcare professionals, except for clinical pharmacists [3]. Similarly, data from Germany add information obtained directly from adult patients (n = 1220) and parents of children with CF (n = 891). In a nationwide German survey [4] on patient experience and satisfaction we assessed whether or not patients saw allied health professionals (AHPs) in the preceding year. The rate of AHP utilisation was lower than expected, particularly with respect to psychosocial staff: only 48% of parents and 26% of adult patients reported at least one contact with psychosocial staff in the preceding year. Remarkably, ⁎ Corresponding author. Tel.: + 49 385 479 26 42; fax: +49 385 479 26 45. E-mail address: [email protected] (G. Ullrich).

adults attending an adult programme had even lower rates of utilisation than adults seen in “mixed” centres (caring for paediatric and adult CF patients). AHP subspecialty

Parents of children with CF (n = 891)

Adults in mixed centre (n = 821)

Adults in adult centre (n = 399)

Physiotherapists Dieticians Psychosocial staff

88% 70% 48%

81.1% 53.0% 36.0%

72.7% 31.6% 21.8%

AHP utilisation rates in the preceding 12 months: Adults had significantly (p (χ2) b 0.01) lower attendance rates than children, with the lowest rates when they were treated in adult rather than in mixed (paediatric and adult) centres.

Subjects who did meet psychosocial professionals reported that these encounters were not always favourable: compared to other AHPs and to physicians, psychosocial professionals had a higher frequency of unsatisfactory ratings, e.g. regarding “staff being well informed about the patient's course” (21% vs. 5% to 13%) and “staff being trustworthy” (23% vs. 11% to 17%). A US survey [5] on patient experience with care also revealed that CF centre staff did not adequately address mental health issues. In conclusion, both professionals and patients state that people with cystic fibrosis do not receive adequate support regarding their mental health. Improvement opportunities exist in many centres in the US and in Europe. However, it will be a challenge to close the gap between the ideal and the “real” world, i.e. standards of care versus daily practice. References [1] Kerem E, Conway S, Elborn S, Heijerman H. Standards of care for patients with cystic fibrosis: a European consensus. J Cyst Fibros 2005;4:7–26. [2] Abbott J, Elborn JS, Georgiopoulos AM, Goldbeck L, Marshall BC, Sabadosa KA, et al. Cystic Fibrosis Foundation and European Cystic Fibrosis Society Survey of cystic fibrosis mental health care delivery. J Cyst Fibros 2015; 14:533–9.

http://dx.doi.org/10.1016/j.jcf.2015.05.012 1569-1993/© 2015 European Cystic Fibrosis Society. Published by Elsevier B.V. All rights reserved.

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Letter to the Editor

[3] Elborn JS, Hodson M, Bertram C. Implementation of European standards of care for cystic fibrosis — provision of care. J Cyst Fibros 2009;8:348–55. [4] Steinkamp G, Ullrich G, Stahl K. Use of allied health services in CF centres — results from a nationwide survey in Germany. J Cyst Fibros 2013;12:s124 [(No. 295), [Abstract]].

[5] Homa K, Sabadosa KA, Marrow LC, Marshall BC. Experience of care from the perspective of individuals with cystic fibrosis and families: results from 70 CF Foundation accredited programs in the USA. J Cyst Fibros 2015;14:515–22.

The ideal and the real world of mental health care delivery.

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