Patient experiences of interprofessional collaboration and intersectoral communication in rare disease healthcare in Germany - a mixed-methods study

被引：2

作者：

Inhestern, Laura ^{[1
]}

Otto, Ramona ^{[1
]}

Brandt, Maja ^{[1
]}

Zybarth, David ^{[1
]}

Oheim, Ralf ^{[2
]}

Schueler, Helke ^{[3
]}

Mir, Thomas S. ^{[4
]}

Tsiakas, Konstantinos ^{[5
]}

Dibaj, Payam ^{[6
]}

Zschuentzsch, Jana ^{[7
]}

Okun, Pamela M. ^{[8
]}

Hegenbart, Ute ^{[8
,9
]}

Sommerburg, Olaf ^{[8
,10
,11
]}

Schramm, Christoph ^{[12
]}

Weiler-Normann, Christina ^{[12
]}

Haerter, Martin ^{[1
]}

Bergelt, Corinna ^{[1
,13
]}

机构：

[1] Univ Med Ctr Hamburg Eppendorf, Dept Med Psychol, Hamburg, Germany

[2] Univ Med Ctr Hamburg Eppendorf, Inst Osteol & Biomech, Hamburg, Germany

[3] Univ Med Ctr Hamburg Eppendorf, Dept Cardiol, Hamburg, Germany

[4] Univ Med Ctr Hamburg Eppendorf, Dept Pediat Cardiol, Hamburg, Germany

[5] Univ Childrens Hosp, Univ Med Ctr Hamburg Eppendorf, Hamburg, Germany

[6] Univ Med Ctr Gottingen, Ctr Rare Dis Gottingen ZSEG, Dept Pediat, Gottingen, Germany

[7] Univ Med Ctr Gottingen, Dept Neurol, Gottingen, Germany

[8] Heidelberg Univ, Ctr Rare Dis Heidelberg, Med Ctr, Heidelberg, Germany

[9] Heidelberg Univ Hosp, Amyloidosis Ctr, Heidelberg, Germany

[10] Heidelberg Univ Hosp, Allergy & Cyst Fibrosis Ctr, Dept Pediat 3, Div Pediat Pulmonol, Heidelberg, Germany

[11] German Ctr Lung Res DZL, Translat Lung Res Ctr Heidelberg TLRC, Heidelberg, Germany

[12] Univ Med Ctr Hamburg Eppendorf, Martin Zeitz Ctr Rare Dis, Hamburg, Germany

[13] Univ Med Greifswald, Dept Med Psychol, Greifswald, Germany

来源：

ORPHANET JOURNAL OF RARE DISEASES | 2024年 / 19卷 / 01期

关键词：

Rare disease; Healthcare; Intersectoral collaboration; Patient satisfaction; Quality of care;

D O I：

10.1186/s13023-024-03207-9

中图分类号：

Q3 [遗传学];

学科分类号：

071007 ; 090102 ;

摘要：

Background Rare diseases are often complex, chronic and many of them life-shortening. In Germany, healthcare for rare diseases is organized in expert centers for rare diseases. Most patients additionally have regional general practicioners and specialists for basic medical care. Thus, collaboration and information exchange between sectors is highly relevant. Our study focuses on the patient and caregiver perspective on intersectoral and interdisciplinary care between local healthcare professionals (HCPs) and centers for rare diseases in Germany. The aims were (1) to investigate patients' and caregivers' general experience of healthcare, (2) to analyse patients' and caregivers' perception of collaboration and cooperation between local healthcare professionals and expert centers for rare diseases and (3) to investigate patients' and caregivers' satisfaction with healthcare in the expert centers for rare diseases.Results In total 299 individuals of whom 176 were patients and 123 were caregivers to pediatric patients participated in a survey using a questionnaire comprising several instruments and constructs. Fifty participants were additionally interviewed using a semistructured guideline. Most patients reported to receive written information about their care, have a contact person for medical issues and experienced interdisciplinary exchange within the centers for rare diseases. Patients and caregivers in our sample were mainly satisfied with the healthcare in the centers for rare diseases. The qualitative interviews showed a rather mixed picture including experiences of uncoordinated care, low engagement and communication difficulties between professionals of different sectors. Patients reported several factors that influenced the organization and quality of healthcare e.g. engagement and health literacy in patients or engagement of HCPs.Conclusions Our findings indicate the high relevance of transferring affected patients to specialized care as fast as possible to provide best medical treatment and increase patient satisfaction. Intersectoral collaboration should exceed written information exchange and should unburden patients of being and feeling responsible for communication between sectors and specialists. Results indicate a lack of inclusion of psychosocial aspects in routine care, which suggests opportunities for necessary improvements.

引用

页数：9

共 32 条

[31]

Winkler J., 2009, ADJUSTIERUNG SOZIALE

[32] Australian children living with rare diseases: experiences of diagnosis and perceived consequences of diagnostic delays [J].

Zurynski, Yvonne ;

Deverell, Marie ;

Dalkeith, Troy ;

Johnson, Sandra ;

Christodoulou, John ;

Leonard, Helen ;

Elliott, Elizabeth J. .

ORPHANET JOURNAL OF RARE DISEASES, 2017, 12

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