Update 2020 - Contact: Ulrike Smrekar, E-mail: firstname.lastname@example.org
A crucial precondition for the implementation of the mental health guidelines, namely personnel resources, has improved over the last two years. Especially the time psychologists are dedicated to CF care has increased and an acknowledged working group – psychosocial staff in CF care in Austria – has been established.
MH screening is still routine only at the Innsbruck CF center. But other centres are thinking of starting MH screening, therefore psychologists from these centres visited the CF Center in Innsbruck in order to shadow the screening process.
In several Austrian CF-specific events the topics mental health guidelines, screening of anxiety and depression and treatment were of central importance.
The Austrian carer organisations attach great importance to this topic and support patients by e.g. financing psychotherapeutic treatment.
An information leaflet on MH guidelines and screening is available in German and is handed out. In the context of evaluating the longtime effects of psychosocial variables linked to illness trajectory, main psychological research interests of the CF centre Innsbruck are into CF, resilience factors and the role of positive emotions in psychological well-being and adherence strategies. Remote psychosocial support and intervention for the personalisation of adherence and coping behaviors is another topic.
Mitmansgruber H, Smrekar U, Eder J, Ellemunter H (2019) Predicting psychological well-being and symptoms in adults living with cystic fibrosis: the role of self-compassion and psychological resilience. [poster] ECFS, Liverpool, UK, June.
IAt CF Centre Innsbruck the MH Guideline were introduced. MH Screening was established in the adult CF Patient Group in 2015. In February screening was offered to parents. Most of the parents agreed to participate. MH Screening in adolescents was also started.
An information leaflet was made in the German language.
Helmut Ellemunter informed the other Austrian Center Directors of the activities of the MH Working Group and offered support in implementation. They reacted positive.
MH Guidelines were presented in a lecture at the patient organization meeting in Vienna and in Innsbruck.
Psychologist joining efforts to initiate Mental Health care screening in Australia.
Update 2020 - Contact: Trudy Havermans, E-Mail: email@example.com
- Boon M, Calvo-Lerma J, Claes I, Havermans T, Asseiceira I, Bulfamante A, Garriga M, Masip E, van Schijndel BAM, Fornes V, Barreto C, Colombo C, Crespo P, Vicente S, Janssens H, Hulst J, Witters P, Nobili R, Pereira L, Ruperto M, Van der Wiel E, Mainz JG, De Boeck K, Ribes-Koninckx C (2020). Use of a mobile application for self-management of pancreatic enzyme replacement therapy is associated with improved gastro-intestinal related quality of life in children with Cystic Fibrosis. J Cyst Fibros. 2020 Apr 22. pii: S1569-1993(20)30114-4.
- Boon M, Claes I, Havermans T, Fornés-Ferrer V, Calvo-Lerma J, Asseiceira I, Bulfamante A, Garriga M, Masip E, Woodcock S, Walet S, Barreto C, Colombo C, Crespo P, Van der Wiel E, Hulst J, Martinez-Barona S, Nobili R, Pereira L, Ruperto M, Vicente S, De Boeck K, Ribes-Koninckx C; MyCyFAPP consortium (2019). Assessing gastro-intestinal related quality of life in cystic fibrosis: Validation of PedsQL GI in children and their parents. PLoS One. 2019 Dec 20;14(12).
- Bell SC, Mall MA, Gutierrez H, Macek M, Madge S, Davies JC, Burgel PR, Tullis E, Castaños C, Castellani C, Byrnes CA, Cathcart F, Chotirmall SH, Cosgriff R, Eichler I, Fajac I, Goss CH, Drevinek P, Farrell PM, Gravelle AM, Havermans T, Mayer-Hamblett N, Kashirskaya N, Kerem E, Mathew JL, McKone EF, Naehrlich L, Nasr SZ, Oates GR, O'Neill C, Pypops U, Raraigh KS, Rowe SM, Southern KW, Sivam S, Stephenson AL, Zampoli M, Ratjen F (2020). The future of cystic fibrosis care: a global perspective. Lancet Respir Med. 2020 Jan;8(1):65-124.
- Havermans T, Willem L (2019). Prevention of anxiety and depression in cystic fibrosis. Curr Opin Pulm Med. 2019 Nov;25(6):654-659.
2017: Presentation of guidelines at the Belgian Centre Day organized by the patient association.
2016: Implementation of screening in University Hospital of Leuven (every 2 years), University Hospital Antwerp.
Translation of information sheets for professionals and patients/parents (Flemish and French)
There is no policy for screening, though this will be discussed at the 8th south eastern CF conference. The MH working group will be kept updated on this.
Translation of information sheets for professionals and patients/parents.
Presentation of the Guidelines and the tools for the screening, commencing November 2017.
In April 2018, 3rd French CF Conference and 1 symposia will be dedicated to MH on various aspects : one is dedicated to MH screening.
Update 2020 - Contact: Ralf Thalemann, E-mail: firstname.lastname@example.org, Annette Katscher-Peitz, E-mail: email@example.com, Johanna Gardecki, E-Mail: firstname.lastname@example.org, Doris Staab, E-Mail: email@example.com
CF-Research/ COACH (Chronic Conditions in Adolescents: Implementation and Evaluation of Patient-centred Collaborative Healthcare)
Adolescents with chronic illnesses are faced with a variety of challenges and sometimes have psychological stress such as depressed mood, worries and illness-related fears. There is currently little research on the optimal and early treatment of mental stress in adolescents with chronic illness. The COACH (Chronic conditions in Adolescence: Implementation and Evaluation of Patient-centered Collaborative Healthcare) network project is concerned with this topic. The main goal of the network is to develop and evaluate an interdisciplinary care model for chronically ill children and adolescents from 12-21 yrs who suffer from diabetes, cystic fibrosis or chronic arthritis. The CF subproject within the consortium aims for screening adolescents and young adults with CF for depression and anxiety to identify additional support needs. The impact of mental illness such as anxiety and depression on therapy adherence and clinical outcome will also be considered. For the treatment of psychological stress, an easily accessible, internet-based psychological therapy is developed and evaluated in another subproject.
TTT-CF – Improving patient adherence during the transition from adolescent to adult in patients with cystic fibrosis
Project to support adolescents and their parents/ caregivers through the transition process, to run systemic one-to-one sessions with the adolescents and systemic family sessions with the parents and their child, to organize joint consultations with the pediatrician and the internist, and to plan trainings on different topics for the CF patients, etc.
Patients create knowledge: Patient science for research into rare diseases - a citizen science study using the example of cystic fibrosis
- To strengthen the active participation of CF patients and relatives into cystic fibrosis research - patient empowerment. In this project we include 12 CF patients and parents of affected children (citizen researchers) in the whole research process, that means that they actively participated in finding the research questions they are interested in (they´ve chosen everyday problems of patients and caregivers affected by cf) and design, conduct and evaluate research at eye level with CF-specialists and other scientists. Typical and most important everyday problems of CF patients are systematically recorded and analysed. The group designed a questionnaire covering daily problems in the areas of professional activity, living, mobility & travel, social environment & leisure and CF therapy & care. The CFQ-R was included to get valid data of Health-Related Quality of Life (HRQoL).The study enables people affected by CF to participate in research at the highest level and thereby creates new insights in important everyday problems as well as identifies where CF patients and parents see specific needs for support and orientation in dealing with these conflicts.
An information and education leaflet in German on mental health issues and mental health screening for our patients which is based on the CFF patients' leaflet.
Ulrike Smrekar presented the leaflet in a meeting with German colleagues last week where it was well-received.
Lutz: according to your recent request, I would like to inform the Working Group that a research group coordinated by myself has received a grant of 2.8 Mio. Euro from the German Ministry of Education and Research for a project entitled “COACH = Chronic Conditions in Adolescents: Implementation and Evaluation of Patient-Centred Collaborative Healthcare”. Our research program will create an opportunity to disseminate and implement mental health screening and indicated behavioral interventions for adolescents with CF in German CF clinics.
Update 2020 - Contact: Edwina Landau, E-Mail: firstname.lastname@example.org
- Cough and Sputum Embarrassment in Cystic Fibrosis Patients. This research evaluates how patients feel about their sputum and how this affects their compliance to treatment. Israel Cystic Fibrosis Society. Presented at Bi-Annual National Meeting, Netanya, Israel, November 2019.
- Efficacy of a Yoga Breathing Program on Quality of Life in CF patients.
- Research on the use of yoga breathing techniques and yoga postures will enhance the overall emotional and physical wellbeing of CF patients. This is awaiting Helsinki approval.
Mental Health screening at the Schneider Graub Lung Clinic
We presented the Guidelines and the tools for the screening at the Israeli CF conference, and a national psycho-social meeting is planned in order to implement the screening in other centers.
Update 2020 - Contact: Sonia Graziano, E-Mail: email@example.com
MH screening is a routine in the CF Center in Italy; screening of anxiety (GAD-7) and depression (PHQ-9) are combined now with HRQL (CFQ-R) and Gastrointestinal (GI)-Symptom Tracker (translated and adapted in Italian working with Alexandra Quittner). The study of Sonia Graziano “Rates of depression and anxiety in Italian patients with cystic fibrosis and parent caregivers: Implementation of the Mental Health Guidelines” is currently under review (Respiratory Medicine; Graziano et al.; 2020).
Sonia Graziano is currently working on translation in Italian of the CF-CBT Intervention for anxiety and depression in adults with Cystic Fibrosis (Manual and Workbook) with the intention to establish a pilot study research program in collaboration with Drs. Deborah Friedman and Anna Georgiopoulos. She attended the CF-CBT training in Boston together with Diana Kadosh and Marieke Verkleij (November 2019, Massachusetts General Hospital).
- Graziano S, Alghisi F, Ciciriello F, Lucidi V, Tabarini P, Quittner AL (2019). Italian Translation of Gastrointestinal (GI) Symptom Tracker in Patients with Cystic Fibrosis. Poster: ECFC 2019 – Liverpool, UK, June.
- Savi D, Graziano S, Majo F, Alghisi F, Montemitro E, Di Biase R, Bella S, Lancellotti S, Di Toppa MV, Tabarini P, Lucidi V (2019). Transition readiness, clinical and psychological variables in patients with cystic fibrosis: a single center experience in Italy. Poster: ECFS 2019 – Liverpool, UK, June.
- Graziano S, Ciciriello F, Alghisi F, Righelli D, Quittner AL, Boldrini F, Lucidi V,
Tabarini P (2019). A CF Risk Factor Model: Gastrointestinal, Psychological
Symptoms and Quality of Life in Cystic Fibrosis. Poster: NACFC, Nashville, TN,
2017: The presentation of the MHG at the national conference.
The following centers that have started implementing the guidelines:
• Bambino Gesù Pediatric Hospital (Rome) FC center;
• Piemonte e Valle d'Aosta FC center;
• Messina FC center;
• Ancona FC center;
• Treviso FC center;
• Firenze FC center;
• Bari FC center.
16 June 2017 (Bambino Gesù Pediatric Hospital) there will be a meeting on mental health screening:" SCREENING FOR DEPRESSON AND ANXIETY IN CHRONIC DISEASE ".
Update 2020 - Contact: Marieke Verkleij, E-mail: firstname.lastname@example.org
Focus on resilience: Screening of anxiety (GAD-7) and depression (PHQ-9) are combined now
Marieke Verkleij received the CF Circle of Care collaboration grant with Anna Georgiopoulos and Deborah Friedman (USA) to develop eHealth CF-CBT; an online cognitive behavioral therapy program for people with CF in Dutch and English. In 2020 she’ll pilot the Dutch eHealth CF-CBT program in Amsterdam UMC with funding from the Dutch Cystic Fibrosis Foundation.
Marieke Verkleij is currently working on translation of the Gastrointestinal (GI)-Symptom Tracker into Dutch.
- Verkleij M, Geenen R, Landau E, van Dijk-Lokkart EM, Quittner A (2019). Improving treatment adherence in adolescents with cystic fibrosis: feasibility of the "CF My Way" intervention program. [poster] ECFS, Liverpool, UK, June.
- Verkleij M, Georgiopoulos A (2019). An International Collaboration to Adapt the MGH CF-Specific CBT Program for Prevention of Depression & Anxiety into CF Team Guided, Internet Delivered Modules in English & Dutch. [poster and oral presentation] Vertex 4th Annual CF Circle of Care Colloquium, Liverpool, UK, June.
- Verkleij M, Georgiopoulos A, Friedman D (2019). Development of a therapist-guided internet-delivered CBT Intervention for anxiety and depression in adults with Cystic Fibrosis (eHealth CF-CBT): An international collaboration. [poster and oral presentation] NACFC, Nashville, TN, Oct.
- Verkleij M (2019). Psychosocial aspects of CF. CF Europe. South Eastern CF Congress, Kiev, September.
- Verkleij M (2020). Human and Social Sciences- State of the art lecture. 14th European CF Young Investigators´Meeting Paris, Feb.
9-2-2017 Workshop at the National CF-congress ‘Van Hielprik tot donorlong’. Marieke
8-12-2017 Workshops at the NL-B CF symposium: Screening and treatment of anxiety and depression: research or standard of care?
Translation of information sheets for professionals and paitents/parents.
Update 2020 - Urszula Borawska is involved in the project "Supporting and educating patients after CF diagnosis in their child" (various activities: workshops, support group, book, parent to parent; to help parents in the first years after diagnosis). Urszula Borawska received the CF Circle of Care grant and is currently preparing documents.
Urszula Borawska is also planning a summary of the results and consequences of screening in children and parents.
The Mental Health Guideline was implemented in the new CF pediatric center in Warsaw, February 2017. We screen patients using GAD-7 and PHQ-9. We also started to screen parents after the CF congress in June. Screening tools are also used in two CF centers for both children and adults patients: in Karpacz and Rabka.
Now we are in the process of translating the information sheets for professionals and for patients.
Russian version of the Thorax paper with the screening guidelines
No free of charge qualified psychological support available. Mental Health care for such patients is provided primarily in Saint-Petersburg due to Charitable Foundation "Ostrova", which is specialized at CF-treatment. The biggest CF-center is in Moscow, but there is no full-time neither visiting psychologist.
In Russia people suffering from CF are considered to be "disabled" (invalids) and get support from governmental health care structures, set to be acquired by all disabled people without dividing into other categories. It is rather complicated system.
At CF Centre Ljubljana, Children’s hospital, GAD-7 and PHQ-9 are used for screening at annual patient review from November 2017. The clinical psychologist, as a member of CF team, conducts a broader review and in case of elevated scores invites to further psychological treatment.
Translations of GAD-7 and PHQ-9 have been made.
Translations of the information sheets for professionals and patients in being done.
Update 2020 - Contact: Stina Järvholm, E-mail: email@example.com
In the four CF-centers in Sweden the work around psychosocial research and evaluation have lately been focused in implementing the screening and evaluate the results and patient acceptance. There has also been a national collaboration in creating robust psychosocial measures to annually report to the national CF-register. Areas of interest is for example how to develop easy pathways for help for the young adults with mental health issues and how to best support the increasing elderly group of adults with CF.
- Järvholm S, Ericson P, Gilljam M. (2020). Patient acceptance and outcome of mental health screening in Swedish adults with cystic fibrosis. Qual Life Res. 2020 Jan 9. doi: 10.1007/s11136-020-02417-5. [Epub ahead of print]
Update 2020 - Contact: Janice Abbott, E-Mail: JAbbott@uclan.ac.uk
Professor Janice Abbott has received a prestigious international award from the Cystic Fibrosis Foundation. The Carolyn and Richard Mattingly Award is given each year in recognition of distinction. The award recognises research and leadership in mental health care and a commitment to the mental health and well-being of individuals with cystic fibrosis. Janice received the award at the North American Cystic Fibrosis Conference in Nashville, 2019.
Research topics: Different ways of coping and association with surviving. Long-time follow-up over 20 years.
Some CF units are implementing the GAD-7 and PHQ 8 or 9 at annual review. This is either completed face to face with the patient and psychologist, or a nurse who then hands it over to the psychologist, and it appears that scores above moderate are followed up with an invitation to opt in to psychology.
Alongside, or instead of, these measures, many units are using self-report measures created themselves based on the psychology annual review consensus document (April, 2016). This involves conducting a broader review, alongside screening for anxiety and depression, whereby patients are asked, for example, if they have perceived difficulties or concerns that commonly affect adults with CF including mood problems, stress, procedural anxiety, low self-esteem, lack of support, anger, eating problems, body image concerns, pain, decision making difficulties, relationship difficulties, issues with sleep, trauma, and concerns about changes in health. Patients can place a tick next to any they have experienced. These reviews also provide opportunities for patients to be informed of the clinical psychology service and to opt in should they wish.
Some units also mentioned using the CFQ, ‘goal setting forms’ and the SDQ.