Systematic assessment of health care perception in adults with congenital heart disease in Germany

Abstract

Background: The number of adults with congenital heart disease (ACHD) is steadily rising due to increased survival rate and improved medical resources. Accordingly, more than 330,000 ACHD are currently living in Germany. Almost all of them require lifelong specialized medical follow-up for their chronic heart disease, often accompanied by residua, sequelae, or comorbidities. Primary care physicians (PCPs) are a crucial factor in directing patients to ACHD specialists or specialized institutions, but despite all efforts, the number of ACHD under specialized care is low, the lost-to-follow-up rate is high, and the morbidity and mortality is substantial. The present cross-sectional study was designed to systematically characterize the health care of ACHD from a patient perspective, including (I) use of medical care by ACHD, (II) medical counselling needs, and (III) perceived satisfaction with health care. Methods:The German-wide analysis was based on a 25-item questionnaire designed to address different aspects of medical status and health issues of ACHD from their own perspective, performed between May of 2017 and July of 2020.Results: A total of 4,008 ACHD (52% female; mean age 41.9±17.2 years) completed the questionnaire. The majority of ACHD (3,524, 87.9%) reported, that they consulted their PCP for non-cardiac health problems, and 49.7% (n=1,991) consulted their PCP also for medical problems associated with the underlying CHD.Almost all ACHD reported a need for medical advice concerning exercise capacity and daily life activities, occupational skills, pregnancy, rehabilitation, genetic counselling, insurance, and retirement. A total of 1,840 (45.9%) patients were not aware of the existence of certified ACHD specialists or centers. Moreover, 2,552 (67.6%) of those surveyed were uninformed about patient organizations for ACHD. Conclusions:The present study demonstrates that ACHD are largely uninformed about the ACHD care structures available nationwide, although the patients have a great need for specialized follow-up, advice, and care.

‘Well-being paradox’ revisited: a cross-sectional study of quality of life in over 4000 adults with congenital heart disease

“…Detailed information on the rationale, design and methods is documented in a former published paper. 6 VEMAH is a multicentre, cross-sectional study to assess the healthcare situation of ACHDs in Germany. Coordination of VEMAH was initiated and carried out by the German Heart Centre Munich.…”

Healthcare status of adults with pulmonary hypertension due to congenital heart disease

“…Despite the importance of specialized care for CHD, both physicians and patients have been found to be insufficiently informed about targeted ACHD clinics and centers as well as pediatric cardiologists in private practice and cardiologists with ACHD certification ( 13 , 22 ). The number of referrals from PCPs to CHD specialists was correspondingly low, even when they knew that the patient had a CHD.…”

“…This cross-sectional, questionnaire-based study was part of a recent nationwide survey about the status of care for adults with CHD (ACHD) throughout Germany (“VEmaH study”), which included more than 4,000 patients ( 13 ). Within this survey, a subgroup of 803 ACHD was analyzed ( Figure S1 ).…”

“…Medical records were reviewed for healthcare-related information, sociodemographic parameters, relevant VSD [13] Ebstein anomaly [29] d-TGA [81] d-TGA [7] PS [27] CoA [71] PA + VSD [5] Aortic aneurysm [14] TOF [69] ASD [4] MVPS [13] VSD [56] AVSD [4] IAA [1] ASD [49] ccTGA [2] ccTGA [27] Mitral valve disease [2] Connective tissue disease [23] CoA [2] AVSD [19] Ebstein anomaly [2] TA [17] PAPVC [2] PA + VSD [15] TOF [2] DIV [12] TA [2] Mitral valve disease [12] DIV [1] Cardiomyopathy, congenital [11] DORV (Fallot-Type) [1] PDA [10] DORV + TGA [1] AVSD, partial [9] AVSD, partial [1] Subaortic stenosis [9] PA + IVS [8] PAS [7] DORV (Fallot-Type) [7] TAC [6] DORV + TGA [5] HCM [4] PAPVC [4] TAPVC [4] HLHS [1] Others* [12] *…”

Ambulatory Care in Adult Congenital Heart Disease—Time for Change?

“…Socioeconomically deprived groups are overrepresented in this group [ 8 , 9 ]. Many adults with CHD also report they are unaware of available healthcare services [ 10 ]. The costs and burden on the patient of outpatient healthcare are increasingly recognised in the wider healthcare setting [ 11 ].…”