Caring for Patients with Neuromuscular Diseases in Switzerland
Care-NMD-CH
At a glance
- Co-project leader : Dr. Veronika Waldboth
- Project team : Barbara Grädel Messerli, Hannele Hediger, Mirjam Mezger, Prof. Dr. Maria Schubert
- Project status : ongoing
- Funding partner : Other (Schweizerische Muskelgesellschaft), Third party (F. Hoffmann-La Roche AG, Biogena Switzerland AG)
- Project partner : Kantonsspital St. Gallen, Kinderspital Zürich - Eleonorenstiftung, Inselspital Bern, Association Suisse Romande Intervenant contre les Maladies neuro-Musculaires ASRIMM, Associazione Malattie Genetiche Rare, Schweizerische Stiftung für die Erforschung der Muskelkrankheiten, SMA Schweiz, Universitätsspital Zürich, Schweizerische Muskelgesellschaft
- Contact person : Veronika Waldboth
Description
Background and Problem
Neuromuscular diseases (NMD) are rare genetic conditions that have
very serious repercussions for affected individuals and their
families. The management of NMD is complex and requires a
coordinated, interdisciplinary approach to care. At present, there
is no primary causal treatment for the large majority of NMDs, and
affected individuals have to cope with progressive muscle wasting,
weakness, recurring health crises and limited life expectancy.
Due to improvements in symptomatic treatment and technology,
individuals survive longer than ever before. Family caregivers are
confronted with rising caregiver demands, high vulnerability for
caregiver burden and increased risk for physical or psychosocial
problems. Major life transitions such as the transition of an
affected young person into adulthood and the late stages of the
disease are among the most challenging disease stages.
This population would benefit from an evidence-based and
family-centred approach to care that empowers them to cope with
crises and challenges and adapt to change. However, affected
individuals are feeling under supported and face difficulty in
accessing the appropriate specialist health care services. Today,
seven Swiss neuromuscular centres for NMD patients contribute to
high quality of care, but due to the multitude of health and mental
problems care in general and care coordination of NMD patients in
specific is challenging and time consuming. In addition, there is
lack of resources and cost pressure which endanger financial
sustainability of care coordination for patients with NMD.
Research Aim
Therefore, the proposed study aims to investigate the current care
situation of patients with NMD and their families in Switzerland to
describe the status quo of the practice of care and to identify
areas that work well and areas that need attention. This study
further aims to develop and implement an evidence-based and family
centred concept for NMD-Care Management and to evaluate its benefit
for patients and families, for the interdisciplinary team, for the
health care organisation and at a policy level.
Method
The proposed study involves quantitative and qualitative methods
within a mixed methods study design. The study has three study
phases: phase 1: situation analysis of the current care situation;
phase 2: development of concept for NMD-Care Management; phase 3:
implementation and evaluation of Care Management Services.
The study is multi-centred and involves several Swiss health care
institutions across language regions that are involved in the care
of the NMD population. Throughout the project, patients, family
members, health professionals and relevant stakeholders are
involved, which positively influences long-term sustainability of
the Care Management Service.
Data Collection and Analysis
Qualitative (interview data) and quantitative data (chart review,
survey, outcome measures) will be collected from affected patients
and their families, treating health professionals and other
stakeholders / experts from different health care settings
(inpatient, outpatient, long-term care). Interviews will be tape
recorded, transcribed, and then analysed according to principles of
qualitative data analysis. Quantitative elements will be analysed
using descriptive and inferential statistics and multilevel
analyses (linear mixed models) over time, where relevant.
Benefits
Expected positive effects of the Care Management service on
patients and families are better family functioning, better quality
of life, decreased caregiver burden, increased emotional,
psychosocial and physical health, satisfied health care needs,
fewer acute events and reduced hospitalisations. Among the expected
benefits for professionals and at the institutional and policy
level are increased quality of care and continuity of care,
elimination of duplication, NMD expert network building and
strengthening within and across health care settings, formation and
exchange of NMD expert knowledge and reduced health care Costs.
Further information
Publications
-
Waldboth, Veronika; Hediger, Hannele; Nemecek, Gabriela; Fröhli, Ramona; Mezger, Mirjam; Schubert, Maria,
2021.
Winterthur:
ZHAW Zürcher Hochschule für Angewandte Wissenschaften.
Available from: https://doi.org/10.21256/zhaw-23587
-
Waldboth, Veronika; Patch, Christine; Mahrer-Imhof, Romy; Metcalfe, Alison,
2021.
Journal of Advanced Nursing.
77(4), pp. 1921-1933.
Available from: https://doi.org/10.1111/jan.14754