Life chances after surgery of congenital heart disease

Transcription

1 Life chances after surgery of congenital heart disease From the research project Life chances after surgery of congenital heart disease Financed by the German Research Association (WE 2670/1-1 and GE 1167/2-1) to Armin Wessel and Siegfried Geyer) Prof. Dr. Siegfried Geyer, Medical Sociology Unit, Hannover Medical School

2 Comparisons of patients with the general population- why?

3 Questions to be answered Is the proportion of economically active women and men with CHD similar to women and men from the general population? Are women and men with CHD less satisfied with their occupations than women and men without CHD? Do women and men with CHD have the same opportunities for upward and downward social mobility than women and men from the general population? Do women and men with CHD have higher distress than women and men from the general population? Do women and men with CHD have the same prospects of finding partners and to have children?

4 Types of surgery Curative: The normal function of the heart can be established to normal or approximately to normal; no or minor residual symptoms (20% of all patients) Reparative: The anatomy of the heart is repaired, but the cardiac function is still impaired (61% of all patients) Palliative: Reparative surgery is impossible; marked symptoms and impairments remaining (19% of all patients)

5 Classification of impairments Based on subjective perceptions of patients NYHA I No impairments NYHA II Slight impairments in case of physical activity NYHA III Marked impairments in case of physical activity NYHA IV Physical activity without severe pain or difficulties impossible

6 Who was enclosed in the study? Age groups between 14/17 and below 45 years of age: Women and men who had heart surgery due to a congenital heart disease. All patients were treated at the Göttingen University Hospital (N=361). Procedure: Personal interview and medical examination Comparisons between patients with a congenital heart disease and the general population (10%- sample of the German Socio-Economic Panel)

7 Reasons for non-participation All pat. with CHD-surg. (820/100%) Patients >45J. Syndrome Adress unknown deceased Nonresponders Refusals -64 cases -58 cases -91cases -33 cases -92 cases -121cases Größe der endgültigen Untersuchungsstichprobe nach drei Kontaktversuchen: N=361 From: Geyer et al., CongenHDis 2008

8 Systematic dropouts? Comparisons between participants and non-participants after comparison of hospital files Type of surgery Type of heart defect Age Gender distribution > No differences according to the comparison criteria chosen Quelle: Geyer et al., CongenHDis 2008

9 Life chances: Training and occupation

10 Education, training, and occupation (Women 34,6%, men 65,4%) % Restricted choice of occupation Problems at school Inability to work Applications rejected Workplaces for disabled only Einschränkungen heute Restrictions at the date of interview Problems at the workplace Unemployment Problems to find apprenticeship Problems with insurances

11 Employment: Comparisons between patients and the general population Full-time employment Part-time employment Minor employment Women Men W+M Women Men W+M Women Men W+M Patients*** % SOEP *** % % % % % Unemployed Retired* Not employed** Patients *** % SOEP*** % % % % % * Given up job or early retirement due to health reasons ** Sstudents, pupils, occupational training, housewives *** Row percentages Quelle: Geyer et al., CongenHDis 2009

12 Satisfaction with work : Patients and the general population compared Categories satisfied Intermediate category Categories dissatisfied M&W, with CHD 81,8% 9,5% 8,7% M&F, SOEP 81,7% 9,6% 8,7%

13 Life chances: Social upward- and downward mobility Intergenerational social mobility

14 Social mobility Intergenerational mobility: Social up- and downward mobility of children as compared to the parental generation Social mobility is an indicator for the openness of societies Soziale Mobilität ist ein Indikator für Erfolgschancen, die eine Gesellschaft ihren Mitgliedern eröffnet, unabhängig von ihrer Herkunft oder anderer Merkmale Positionen anzustreben und zu erreichen

15 Classification of occupational positions According to the British Registrar General-classification Unskilled/ semi- skilled Skilled manuals Skilled non- manuals Intermediate Occupations Professionals (liberal professions, top level occupations)

16 Intergenerational social mobility: Changes between parental to filial generation in the general population; patients with congenital heart disease 0=no mobility; 1=one category upward; -1=one category downward, etc. Deviation from parental position All Males Females N % N % N %

17 Intergenerational social mobility: Changes between parental to filial generation in the general population (SOEP) 0=no mobility; 1=one category upward; -1=one category downward, etc. Deviation from parental position All Males Females N % N % N %

18 Intergenerationale soziale Mobilität (Soz. Position: ISCO-88/ Ganzeboom & Treiman, 1996) CHD/gen. P. Age Gender ß = 0,02 ß = -0,10 ß = -0,05 ß = 0,66 Upward mobility Parental social position (V) ß = 0,21 CHD/gen. P. Age Gender ß = 0,02 ß = -0,08 ß = -0,12 Downward mobility Quelle: Geyer et al., EurJCardiovRehPrev 2007

19 Summary of the results on occupation Men with congenital heart disease are more likely to be temporarily employed The satisfaction with occupation of men and women with congenital heart disease does not differ from the satisfaction in the general population The chances of social mobility of patients do not differ from the general population

20 Psychological consequences of congenital heart defects

21 Impairments as quoted by patients (More than one response possible; N=361) Exercise dífficult ,0% Education, occupation 76 21,0% Medical complications 53 14,7% Anxiety, worries 22 6,1% Problems with the scar 21 5,8 % Friendships difficult 18 3,3 % Problems with partner 12 3,3 % Taking medication annoying 10 2,8 % Medical examinations annoying 7 2,0 % Parents too considerate 7 2,0 %

22 Body image (FKB- 20) Rejection of the body: Appraisal of the outer appearance and the perception of defects in physical functioning Vitality: Perception of fitness, power, and health

23 Body image (Mean scores; FKB-20) Rejection of the body (max. 50) Vitality (max. 50) Men Women Men Women Patients 19,2 (6,6) 20,8 (6,8) 36,0 (6,3) 36,4 (6,2) General population 17,4 (6,6) 19,5 (7,3) 36,1 (6,4) 36,9 (7,0)

24 Psychological impairments/ distress in women and men with CHD Somatization: Psychological distress due to physical dysfunction Obsession/ compulsion: Thoughts perceived as unchangeable or undesirable, impulses and activities Unsureness in social contacts: Self-doubts, negative expectations with respect to communication with others Aggressivity and hostility: Irritability, instability, anger Somatization: Psychologial distress due to bodily disfunction Phobic anxiety: Feelings ranging from perceived threats to massive anxiety Paranoid ideation: Misstrauen, Minderwertigkeitsgefühle bis zu Denkstörungen Psychoticism: Interpersonal alienation ranging until symptoms of schizophrenia

25 Psychological distress (Mean scores; BSI; N=1165) Sense of insecurity Aggressiveness Anxiety Men Women Men Women Men Women Patients 2,7 (2,7)* 2,7 (2,2) 3,3 (3,1) 3,4 (3,1) 3,4 (3,2) 3,5 (3,4) General population 1,8 (2,3)* 2,4 (2,6) 2,2 (3,6) 2,7 (3,0) 2,2 (2,7) 2,9 (2,3) Quelle: Geyer et al., PPmP, 2006

26 Distress measures: Summary of the findings Distress measures in males with CHD are higher than in men from the general population The magnitudes of distress measures in males with CHD are corresponding to the scores of women Distress measures of women with CHD are not different from women from the general population Males are suffering more from their CHD than women; this is mainly due to a rather negative body image

27 Results for depression (standardized regression effects), separately for men and women NYHA 2/1:ß=0,02; 3/1:ß=-0,07 VO 2 max Body image: Rejection of the body Body image: Vitality Age 2/1:ß=0,06; 3/1:ß=0,05 ß=-0,07 ß=0,05 ß=0,57 ß=0,25 ß=-0,20 ß=-0,14 ß=-0,08; ß=-0,21 Symptom of distress: Depression Quelle: Geyer et al., Cardiol.Young, 2006

28 Results for hostility (standardized regression effects), separately for men and women NYHA 2/1:ß=0,08; 3/1:ß=-0,08 VO 2 max Body image: Rejection of the body Body image: Vitality Age 2/1:ß=0,16; 3/1:ß=0,07 ß=0,15 ß=0,01 ß=0,46 ß=0,15 ß=0,01 ß=-0,13 ß=-0,13; ß=0,25 Symptom of distress: Hostility Quelle: Geyer et al., Cardiol.Young, 2006

29 Partnership and children

30 Marriage and partnership Percentages of women and men with partnership (married or unmarried) Women Men years years years years Patients Patients 36% 59.1% General population 58.1% 78.3% 21% 48.7% General population 45.0% 75.8% From: Geyer et al., 2010

31 Children 64% of all women (>35 years) in the study had at least one child 40% of all women (>35 years) in the study had at least two children 22% of all women (>35 years) in the study had at least three children

32 Partnership and children: Summary of the findings Women and men with congenital heart disease as compared with the general population are less likely to live in a partnership or to be married Women with congenital heart disease have fewer children than women without CHD

33 Risk of cardiac insufficiency according to the type of congenital heart disease From: Norozi K et al. Incidence and risk distribution of heart failure in adolescents and adults Medizinische with congenital Soziologie MHH heart disease after cardiac surgery. Am J Cardiol. 2006;97(8):

34 Patients with congenital heart disease in Germany Number [n] Patients with less severe heart defects Patients with complex heart defects years 90 survival 80 [%] Nach Schmaltz AA et al., Clin Res Cardiol 97: (2008)

35 Open questions Atypical individuals : Why did some of the patients with curative surgery never take up work, and why are some of the patients with palliative surgery as successful as individuals without CHD? Disease course beyond the age of 45: Cardiac insufficiency, occupational career, distress What results are to be expected if it is taken into account that survival rates in patients with complex heart defects are increasing?

36 How do we continue? How are children with congenital heart disease developing after surgery? Which living conditions are promoting a successful and healthy development over time?

37 Thank you very much for your attention!