Informationen aus dem Verein hpr Switzerland - Rheuma-net

Ausgabe Nummer 19 / Juli 2013
Informationen aus dem Verein hpr Switzerland
Generalversammlung des Vereines hpr
Am 17. September 2013 findet in Zürich die jährliche Generalversammlung des hpr
Switzerland statt.
Wir treffen uns um 17.15 Uhr in den Räumlichkeiten der Rheumaliga Schweiz,
Josefstrasse 92, 8005 Zürich. Anschliessend lädt der hpr Vorstand zum
gemeinsamen Pizzaessen ein.
Die Einladung und die Unterlagen werden zeitgerecht an alle Mitglieder verschickt.
Publikationen
Im Rahmen des Studienganges „MSc Nursing Science“ an der Universität Basel hat
Frau Agnes Kocher eine qualitative Untersuchung bei Systemsklerose-Betroffenen
und deren Angehörigen durchgeführt.
Hier eine Zusammenfassung ihrer Arbeit:
Patientenedukationsprogramm zur Haut- und Schleimhautpflege bei
Systemsklerose – Erfahrungen und Erwartungen von Betroffenen und ihren
Angehörigen: Eine qualitative Studie
Agnes Kocher, RN, MScN, Universitätsklinik für Rheumatologie, Klinische
Immunologie und Allergologie, Inselspital, Universitätsspital Bern
Elisabeth Spichiger, RN, PhD, Institut für Pflegewissenschaft, Medizinische Fakultät,
Universität Basel und Direktion Pflege/MTT, Bereich Fachentwicklung und
Forschung, Inselspital, Universitätsspital Bern
Sabine Adler, MD, Universitätsklinik für Rheumatologie, Klinische Immunologie und
Allergologie, Inselspital, Universitätsspital Bern
Hintergrund
Haut- und Schleimhautmanifestationen wie Hautverdickung, Pruritus, reduzierte
mikrovaskuläre Durchblutung, digitale Läsionen, ästhetische Veränderungen oder
Trockenheit der Augen und Schleimhaut sind häufig bei Systemsklerose (SSc). Ein
spezifisches Edukationsprogramm für Betroffene und ihre Angehörigen soll deren
Selbstwirksamkeit und Bewältigungsstrategien im Umgang mit Haut- und
Schleimhautproblemen verbessern.
Zielsetzung
Das Ziel dieser qualitativen Studie war, die Erfahrungen von Betroffenen und
Angehörigen mit Haut- und Schleimhautproblemen in deren Alltag zu explorieren,
nachdem sie im Programm geschult worden waren. Zudem sollten im Rahmen der
Entwicklung und Evaluation des Edukationsprogramms weitere Bedürfnisse und
Erwartungen an das Edukationsprogramm ermittelt werden.
Methoden
Mit acht SSc-Betroffenen und zwei Angehörigen wurden narrative Interviews geführt.
Das Vorgehen mittels qualitativer Inhaltsanalyse erlaubte eine systematische und
regelgeleitete Zusammenfassung der transkribierten Interviews sowie das induktive
Bilden von Kategorien.
Ergebnisse
Die Resultate zeigen auf wie SSc-Betroffene und ihre Angehörigen Haut- und
Schleimhautsymptome erlebten und wie sie ihren eigenen Therapiemix finden
mussten, um diese Symptome zu handhaben – bereits vor der Diagnosestellung,
aber auch später zusammen mit Gesundheitsfachpersonen. Im Rahmen des
Edukationsprogramms erhielten sie verständliche und hilfreiche Beratung zu Hautund Schleimhautpflege. Mit dem Mangel an Informationen zur Pathophysiologie bei
Diagnosestellung sowie den Reaktionen des Umfeldes auf ihre Krankheit und den
Auswirkungen auf ihr Familien- und Berufsleben blieben sie auf sich selbst gestellt.
Trotzdem behielten sie ihre positive Lebenseinstellung bei und wollten sich nicht mit
möglichen zukünftigen Beeinträchtigungen befassen.
Schlussfolgerungen
Patienten sowie ihre Angehörigen konnten von der SSc-spezifischen, auf ihre
Krankheitsphase angepassten Beratung zu Haut- und Schleimhautpflege profitieren.
Eine zukünftige Entwicklung des Programms sollte darauf abzielen, zusätzlich
einfach zugängliche Informationen über die SSc-Pathologie zu vermitteln, den
Umgang mit Körperbildveränderungen sowie die gezielte Suche nach
vertrauenswürdigen Krankheitsinformationen zu schulen und den Austausch mit
anderen Betroffenen zu fördern.
Der Originalartikel mit dem Titel „Skin and Mucosa Care in Systemic Sclerosis –
Patients’ and Family Caregivers’ Experiences and Expectations of a Specific
Education Programme: A Qualitative Study”
ist zu finden unter: http://www.ncbi.nlm.nih.gov/pubmed/23532980
Informationen aus EULAR
EULAR 2013 in Madrid
Der EULAR Congress 2013 ist bereits
wieder Vergangenheit.
Es gab wie immer eine riesige Anzahl
von interessanten Sessions,
Workshops und Diskussionsrunden.
Von besonderem Interesse für die
Health Professionals (HPs) sind
natürlich die HP sessions, aber auch
die PARE sessions (von den
Patientenorganisationen zusammengestellt) und die Joint Sessions (mit
Beteiligung von HPs, PAREs und ,
Rheumatologen. Der folgende Bericht
fokussiert auf HP sessions, einerseits
zu spezifischen Problemen von
Betroffenen mit rheumatischen
Krankheiten, andererseits zu HP
Interventionen.
Der Bericht wurde uns freundlicherweise zur Verfügung gestellt von Dr Carina
Boström, Senior University Lecturer, Division of physiotherapy,
Karolinska Institute, Stockholm. Sie präsentierte die ‘HP highlights 2013‘.
My key take-home message is that
health professionals can significantly support patients with rheumatic diseases by:
• Physical exercise and activity
• Psychological approaches such as cognitive behavior therapy
• Education and self-management strategies through, for example, web-based
technologies and smart-phones
First, I present some specific health related problems of people with rheumatic
diseases:
Björk and co-authors evaluated sick leave in early RA today compared to 10 years
ago. 120 patients from a cohort from 1996-98 and 275 from a cohort from 2005-2008
were included in their study. The authors found that the far lower sick leave rate
seen today after a diagnosis of RA, compared to the situation 10 years ago, cannot
be explained by differences in sick leave during the year before diagnosis. Although
sick leave is lower today, the sick leave rate in the cohort from 2005-2008 is still high
compared to the general population, which highlights a need to develop efficient
multi-professional intervention strategies, in addition to modern pharmacotherapy.
In a study by Stanmore and co-authors, the incidence of falls, prevalence of fear of
falling and fall risk factors in 535 patients with RA was studied. The authors conclude
from the results of their study that adults with RA are at high risk of falls and fallrelated injuries. It is possible to identify high risk falls patients by asking whether they
have fallen in the past year. Management of swollen and tender lower limb joints,
fatigue and consideration of psychotropic medicines may be the most effective
strategy to reduce falls in this group of patients. Fear of falling, pain, lower limb
strength and poor balance are other useful clinical indicators that may be modified to
prevent falls.
To investigate the prevalence of self-reported sedentary behavior and its association
with pain, fatigue, poor sleep and physical disability, 500 patients with RA was
studied by Loeppenthin and co-authors. They found that sedentary behavior is
prevalent in RA patients. However, the study findings suggest that sedentary
behavior is not associated with pain, fatigue, reduced activity and motivation, sleep
and physical disability. Further research is needed to properly promote reduced
sedentary behavior in RA patients.
To compare the prevalence in symptoms and the use of physiotherapy and/or
occupational therapy reported by patients with systemic sclerosis across five
European countries, Willems and co-authors invited patients to complete an online
survey. A total of 569 patients participated and the five most frequently reported
symptoms were fatigue, Raynaud’s phenomenon, joint pain, muscle pain and
shortness of breath. Use of physiotherapy and/or occupational therapy ranged from
21% to 48%. The authors conclude that there is a substantial variation in the use of
physiotherapy and occupational therapy across the European countries and the
results suggest that the rehabilitation provided is not yet optimally tuned to the needs
of patients in all countries.
Now, I will give some examples of studies on non-pharmacological care.
Soubrier and co-authors evaluated the impact of a nurse-led program on the
management of the co-morbidities: cardiovascular diseases, infection, cancer and
osteoporosis, in RA patients. This is a randomized controlled 6-month trial, with 488
patients in the intervention group and 482 in the control group. As examples, actions
taken into account for cardiovascular diseases were: introduction of lipid-lowering
therapy or anti-platelet therapy, smoking cessation, taking of blood pressure,
purchase of a sphygmomanometer and weight loss. During the 6-month follow-up
period, the number of actions per patient was statistically higher in the intervention
group. The authors concluded that long term follow up of patients is required to better
evaluate the sustainability of this benefit.
Revenäs and co-authors wanted to explore experiences on the crucial aspects for
adoption and maintenance of health enhancing physical activity in patients with RA.
Another aim was to identify participants’ innovations regarding the most important
content of a future internet-based health enhancing intervention. Six focus group
interviews were carried out with 26 individuals with RA. Personal incentives and
mastering, peer support and professional coaching were examples of what was
crucial for adoption and maintenance of physical activity. Chat-groups, fora for social
interaction and customized options were examples of identified important
functionalities of a future internet-based health enhancing intervention.
To evaluate the effectiveness of a progressive muscle strengthening program using a
Swiss ball in 60 patients with ankylosing spondylitis, a randomized control study was
carried out by Souza and co-authors. The intervention group performed exercises 2
times per week for 16 weeks, while the control group continued drug therapy without
any exercise. The results showed that training using a Swiss ball is effective in
improving muscle strength in “abdominal” and “triceps” muscles, “rowing exercise”,
“squat” and “reverse fly”. It also improved walking performance without deleterious
effects on disease activity.
Thorstensson talked about a national program in Sweden to standardize and
improve care and management of patients with hip or knee osteoarthritis. It is a
supported, self-management program including information on pathology, available
treatments, and coping strategies. Physiotherapists are educated over two days
about the program. Patient-reported outcome measures, including EQ-5D, comorbidity, pain, physical activity, self-efficacy, work capacity and satisfaction are
assessed at baseline, 3 and 12 months. Compliance to intervention is reported by the
physiotherapists. These outcomes are registered in a national data base, the “Better
management of patients with osteoarthritis” register. Nearly 17 000 patients from 230
clinics are included. About 1300 physiotherapists over Sweden have been educated
to deliver and evaluate the BOA interventions. Several important results from this
register were presented.
In a RCT by Knopp and co-authors involving 159 knee osteoarthritis patients, two
groups received a supervised exercise program for 12 weeks and the intervention
group also received knee stabilization training. Both exercise groups demonstrated
large improvements in activity limitation, pain and knee instability, which were
sustained six months post treatment. Addition of specific knee joint stabilization
training does not seem to be necessary for patients with knee osteoarthritis suffering
from knee instability. However, subgroup analyses suggest that those persons that
have stronger upper leg muscles at baseline may benefit more from an exercise
program that additionally focuses on knee joint stabilization.
Lindqvist and co-authors described the outcome of rehabilitation care in different
rheumatologic diagnosis. This is a multi-center study in 4 north-European countries
including patients admitted for in- or outpatient multidisciplinary rehabilitation. 1329
patients were evaluated. In all diagnosis groups, patients improved between baseline
and discharge with respect to pain, fatigue, Health Assessment Questionnaire and
EQ-5 D scores. The authors underline the use of similar endpoint measures in
national registries.
Hewlett described how health care professionals might use a cognitive behavioral
approach when supporting patients with fatigue. A systemic review of trials suggests
some evidence for exercise interventions and for psycho-social interventions
including cognitive behavioral therapy.
An example of evaluation of cognitive behavioral therapy was also given by
Macfarlane and co-authors, who wanted to determine the long-term effects of
telephone-delivered cognitive behavior therapy, exercise and combined treatments
compared with treatment as usual among 442 patients with chronic widespread pain.
Participants receiving cognitive behavior therapy had 8 telephone sessions provided
weekly with a therapist, involving techniques to manage pain, and had follow-up calls
at 3 and 6 months. Patients in the exercise group followed a 6-month exercise
program to improve cardiovascular fitness, individually designed for them by a fitness
instructor with whom they had monthly reviews. They found that a six-month program
of telephone-delivered cognitive behavior therapy and/or exercise for chronic
widespread pain is associated with long-term improvements in patient global
assessment of health.
Dures talked about barriers and facilitators using psychological and motivational
approaches to facilitate self-management for patients. Qualitative research
conducted with physicians, nurses, physiotherapists and occupational therapists
within rheumatology, who have undertaken brief skills training, identified the following
barriers: lack of time, the difficulties of changing the existing pattern and focus on
interaction; and concerns about exploring social and emotional aspects of living with
arthritis. Facilitators were: training that balanced theory with time to practice skills
and receive feedback; access to clinical supervision to gain confidence and develop
more advanced techniques; and the perception that patients gained a greater sense
of control and were better able to take responsibility for their treatment, as a
consequence of a more collaborative consultation.
An evaluation of a hospital-based web portal, which provides rheumatology patients
with information and access to their electronic medical records, was presented by
Van Der Vaart. A pre-posttest study on 360 patients with RA was conducted. Age,
amount of internet use and self-perceived internet skills predicted web portal use. Of
the respondents who had logged in, 44% reported to feel more involved in their
treatment and 37% felt they had more knowledge about their treatment. The authors
conclude that the current portal succeeded to offer patients access to their electronic
medical records in a usable and understandable way. While its impact is difficult to
grasp, an evident part of patients feels more empowered due to the web portal.
Finally, Van Eijk-Hustings and co-authors described a study with the aim to
disseminate the EULAR recommendations for the role of the nurse in rheumatic
diseases; assess the agreement and application of the recommendations among
nurses, rheumatologists and patients; and to identify potential barriers for
implementation. A web-based survey was distributed throughout Europe and the
USA. 967 nurses, 2034 patients, and 548 rheumatologists from 23 countries
answered the survey. The results showed that overall agreement with these
recommendations is high but application is low. Furthermore, agreement and
application differ across regions. The survey yielded valuable information that can
support strategies for further implementation of the recommendations.
Der EULAR 2014 findet in Paris statt. www.eular.org
EULAR Educational Visit
EULAR offeriert Educational Visits zu BerufskollegInnen und Forschenden in Europa,
die im Bereich Rheumatologie arbeiten.
Nützen Sie diese spannende Gelegenheit!
Das Verfahren ist einfach:
• Sie bitten Ihre Kontaktperson derjenigen Institution, die Sie gerne besuchen
möchten, einen kurzen formalen Einladungsbrief zu schreiben.
• Unter www.eular.or/health_professionals_educational_vsitis.cfm finden Sie ein
auszufüllendes Formular.
• Dieses reichen Sie zusammen mit dem Einladungsbrief und einem kurzen CV
per Email ein an [email protected].
Die Frist für die Anmeldung 2013 läuft bis 30. September 2013.
Nach dem Besuch schreiben Sie einen 1-seitigen Kurzbericht zuhanden des EULAR
Sekretariats, mit Fokus auf die erreichten Ziele.
Bei Fragen stehen Ihnen Gabriela Kluge, [email protected] oder die
Präsidentin Karin Niedermann, [email protected] gerne zur Verfügung.
In den Eular Newslettern auf www.hpr-switzerland.ch/Eular/newsletter finden Sie
Beispiele von educational visits (z.B. 1/2008; 1/2007; 2/2007).