Circulation Journal Official Journal of the Japanese Circulation Society http://www. j-circ.or.jp
ORIGINAL ARTICLE Pediatric Cardiology and Adult Congenital Heart Disease
Negative Effect of Aging on Psychosocial Functioning of Adults With Congenital Heart Disease Junko Enomoto, PhD; Makoto Nakazawa, MD, PhD
Background: Improvements in life expectancy among adults with congenital heart disease (ACHD) provide them with unique challenges throughout their lives and age-related psychosocial tasks in this group might differ from those of healthy counterparts. This study aimed to clarify age-related differences in psychosocial functioning in ACHD patients and determine the factors influencing anxiety and depression. Methods and Results: A total of 133 ACHD patients (aged 20–46) and 117 reference participants (aged 20–43) were divided in 2 age groups (20 s and 30 s/40 s) and completed the Hospital Anxiety and Depression Scale, Independent-Consciousness Scale, and Problem-Solving Inventory. Only ACHD patients completed an illness perception inventory. ACHD patients over 30 showed a significantly greater percentage of probable anxiety cases than those in their 20 s and the reference group. Moreover, ACHD patients over 30 who had lower dependence on parents and friends, registered higher independence and problem-solving ability than those in their 20 s, whereas this element did not vary with age in the reference participants. Furthermore, ACHD patients may develop an increasingly negative perception of their illness as they age. The factors influencing anxiety and depression in patients were aging, independence, problem-solving ability, and NYHA functional class. Conclusions: Although healthy people are psychosocially stable after their 20 s, ACHD patients experience major differences and face unique challenges even after entering adulthood. (Circ J 2015; 79: 185 – 192) Key Words: Adult congenital heart disease; Aging; Anxiety; Depression; Psychosocial functioning
R
emarkable advances in medical and surgical management have enabled many infants with congenital heart diseases (CHD) to survive into adulthood. Thus, the number of adult CHD (ACHD) patients has increased during the past few decades, outnumbering pediatric patients.1,2 Most ACHD patients have a longer life span than was previously possible, but must deal with different challenges compared with those who do not have the disease. Consequently, some studies are now focusing not only on medical support throughout patients’ lives, but also patients’ psychosocial functioning and quality of life (QOL). It has been established that there is a significant comorbidity of mental disorders with various physical conditions,3–5 particularly for older age groups.6 Therefore, comprehensive studies are required in order to explore the mental disorders of patients with chronic physical conditions, including age-related changes in their psychological functioning. Previous studies on the psychosocial features of ACHD patients were conducted by means of interview or questionnaire surveys,7–17 but results regarding the psychosocial state of patients have been inconsistent.18 According to some reports, psy-
chiatric diagnostic interviews with ACHD patients indicate that between one- and two-thirds of patients exhibit psychiatric issues such as anxiety and mood disorders.7–9 Meanwhile, the results of questionnaire studies vary considerably: some have shown symptoms of anxiety/depression and low emotional functioning (ie, low independence, low self-esteem),10,11 whereas other studies have shown that emotional functioning does not differ from that of healthy individuals.12–15 Furthermore, adult patients with cyanosis or who have undergone the Fontan procedure have shown a higher ratio of depressive symptoms.16,17 The reasons for these inconsistent findings may include differences in sample size, recruiting sources, sociocultural background, etc. However, 2 other issues remain: many investigations did not have specified reference groups and some psychological differences in healthy participants have not yet been ascertained.18 Moreover, clear-cut results have not been obtained because the effects of age were not taken into account, as the targeted age range of ACHD patients in previous studies has been very broad. A patient’s age may affect psychosocial health and QOL,6,19–21
Received June 24, 2014; revised manuscript received October 5, 2014; accepted October 6, 2014; released online November 13, 2014 Time for primary review: 48 days Faculty of Letters, Toyo University, Tokyo (J.E.); Pediatric and Lifelong Congenital Cardiology Institute, Southern Tohoku General Hospital, Koriyama (M.N.), Japan Name of Grant: JSPS Grants-in-Aid for Scientific Research (No. 22730556) to J.E. Mailing address: Junko Enomoto, PhD, Faculty of Letters, Toyo University, 5-28-20 Hakusan, Bunkyo-ku, Tokyo 112-8606, Japan. E-mail: [email protected] ISSN-1346-9843 doi: 10.1253/circj.CJ-14-0682 All rights are reserved to the Japanese Circulation Society. For permissions, please e-mail: [email protected] Circulation Journal Vol.79, January 2015
186
ENOMOTO J et al.
but comprehensive analyses of differences across age groups in ACHD patients have not been properly implemented. Because the tasks that patients must perform generally change with their developmental stage, the issues they must face will also change accordingly. Thus far, only minimal research has been conducted into the relationship between ACHD patients’ psychosocial functioning and age.19–21 In order to provide appropriate and effective support to patients, it is essential that we consider their developmental stage. Therefore, the present study used a reference group and aimed to (1) clarify how psychosocial functioning, such as the presence and severity of anxiety and depression, differ according to the age of ACHD patients’ and (2) determine the factors that influence ACHD patients’ anxiety and depression with age.
Methods Participants ACHD patients, all monitored by the same physician (M.N.), were recruited from the databases of 2 institutions: the Tokyo Clinic and the Southern Tohoku General Hospital in Japan. The inclusion criteria were as follows: (1) diagnosed with CHD and had medical records that could be reviewed; (2) able to read and complete the consent form and questionnaires, which were written in Japanese; and (3) between the ages of 20 and 49. The exclusion criteria were having any cognitive and/or physical limitations that would prevent the potential participant from filling out the questionnaires. The reference group consisted of 117 participants (65 women; age range 20–43 years) recruited from a local seminar, local universities, or who were parents of students at local schools. Procedure The 258 eligible patients received by mail an information letter, a set of questionnaires, and a stamped and addressed return envelope. An informed consent form was included and had to be personally signed by the patient. They were asked to complete the set of questionnaires themselves and to return them within 3 weeks. Informed consent was given by each patient and the study protocol was approved by the medical ethics committee of the Southern Tohoku General Hospital, Japan. Variables and Measures Demographic Variables and Disease Severity Demographic questions were included to obtain each participant’s age, sex, education level, condition of employment, marital status, and presence/absence of children. Based on the initial diagnosis or the specific type of operation, the cardiac defects were classified as being of “simple”, “moderate”, or “great” complexity in accordance with the definitions used in the 2008 ACC/AHA ACHD Guidelines.22 To assess current functional status, the New York Heart Association (NYHA) functional classes were used. They were grouped as NYHA I vs. NYHA II and III, because the numbers of patients classified as NYHA II and III were small. Hospital Anxiety and Depression Scale23 This scale measures the presence and degree of anxiety and depression symptoms. We used the Japanese version of this scale,24 which consists of 7 items (each rated on a 4-point scale from 0 to 3) for each of 2 subscales (anxiety and depression). Scores on each subscale range between 0 and 21. Scores of 0–7 correspond to not having anxiety or depression symptoms (hereafter, “no” case), 8–10 to “possible” anxiety or depression, and 11–21 to “probable” anxiety or depression. A higher score indicates a greater likelihood and severity of anxiety or de-
pression symptoms. Reliability scores (Cronbach’s alpha) were 0.83 for anxiety and 0.63 for depression. Independent-Consciousness Scale25 This scale was originally created in Japanese and measures the transition from dependence to independence in adolescents. For this study, 5 items were selected from 2 subscales: “Independence” (the ability to make decisions regarding one’s future and any difficulties encountered) and “Dependence on parents” (dependence on parents resulting from an inability to make one’s own decisions and the sense of security obtained from being with parents). Additionally, in order to measure their relationships with friends, a new subscale was created, called “Dependence on friends”, which we designed by replacing the word “parents” in all items on the “Dependence on parents” subscale with the word “friends”. The Independent-Consciousness scale, with the inclusion of the newly created subscale, included 15 items in total, each rated on a 5-point scale, as per the original version (and for all subsequent rating procedures). The average for each subscale was calculated and used in our analyses. Cronbach’s alphas were 0.72 for “Independence”, 0.86 for “Dependence on parents”, and 0.82 for “Dependence on friends”. Problem-Solving Inventory (PSI)26 The PSI measures the social skills used for effectively solving problems encountered in daily life. We used a Japanese translation,27 which comprises 32 items in the original version; however, we used a short version (14 items)11 of the scale, created by Heppner and Petersen. Items were rated on a six-point scale; the PSI score was calculated by averaging the 14 items. Cronbach’s alpha was 0.83. Illness Perception We assessed illness perception using a set of 12 items developed for this study, which were derived from previous research28 and qualitative interviews with ACHD patients in a pilot study. Items were rated on a 5-point scale. Through repeated factor analyses (using the maximum likelihood method with a promax rotation), 2 factors were extracted, each with 4 items. We eliminated 4 items because they either had small factor loadings in the post-rotation factor matrix or had high loadings with other factors. Cumulative contribution was 54.5% and the factor loading range of items was from 0.613 to 0.936 for the first factor and from 0.412 to 0.760 for the second factor. Cronbach’s alphas were 0.84 and 0.76, respectively. The first factor included items that assessed individuals’ negative perceptions of their illness (eg, “I cannot do what I want because of my illness.”), and thus was labeled “Negative perception”. The second factor included items that assessed individuals’ desires for their illness to be understood by friends and acquaintances (eg, “I want people around me to understand the seriousness of my illness.”), and thus was labeled “Desire to be understood”. This score was calculated by averaging each of the subscale items. Statistical Analysis Data analysis was conducted using SPSS version 20.0 for Windows (SPSS Japan Inc, Tokyo, Japan). To examine group differences, Fisher’s exact tests for categorical data were performed, together with t-tests and ANOVAs for continuous variables. To identify the associations between depression/ anxiety and other variables, Spearman’s correlation and hierarchical regression analysis were calculated. We performed hierarchical regression analysis for ACHD patients, with the dependent variables related to anxiety and depression and the explanatory variables organized in 4 blocks: demographics, illness perception, independent consciousness, and social problem solving. These 4 blocks were determined by reference to
Circulation Journal Vol.79, January 2015
Aging in ACHD
187
Table 1. Demographics of All Participants and Clinical Characteristics of Patients With ACHD Variable Age (years, mean±SD (range)) 20–29
ACHD patients, n (%)
Reference group, n (%)
P value
28.77±6.83
29.39±5.07
NS
88 (66.2)
56 (47.9)
30–46
45 (33.8)
61 (52.1)
Female
89 (66.9)
65 (55.6)
Ethnicity
Japanese
Japanese
106 (80.9)
110 (94.0)
Full-time worker
74 (55.6)
82 (70.1)
Part-time worker
18 (13.5)
6 (5.1)
4 (3.0)
1 (0.9)
Education level
NS 0.002
>High school education Employment
0.004
Unemployed Homemaker
20 (15.0)
6 (5.1)
Student
15 (11.3)
21 (17.9)
2 (1.5)
1 (0.9)
Married
43 (32.3)
47 (40.2)
Have child/children
33 (25.0)
34 (29.1)
Other Marital status
NS
I
NS 0.00
NYHA: total/20–29 years, 30–46 years* 119 (89.5)/80 (90.9), 39 (86.7)
II, III
14 (10.5)/8 (9.1), 6 (13.3)
efect complexity: total/20–29 years, D 30–46 years**
NS
Simple
35 (26.3)/22 (25.0), 13 (28.9)
Moderate
41 (30.8)/24 (27.3), 17 (37.8)
Great
57 (42.9)/42 (47.7), 15 (33.3)
*Fisher’s exact test for 2 age groups×NYHA was not significant. **Fisher’s exact test for 2 age groups×defect complexity was not significant. ACHD, adult congenital heart disease; NS, not significant; NYHA, New York Heart Association functional class.
a previous study.11 The significance level was set at P
ORIGINAL ARTICLE Pediatric Cardiology and Adult Congenital Heart Disease
Negative Effect of Aging on Psychosocial Functioning of Adults With Congenital Heart Disease Junko Enomoto, PhD; Makoto Nakazawa, MD, PhD
Background: Improvements in life expectancy among adults with congenital heart disease (ACHD) provide them with unique challenges throughout their lives and age-related psychosocial tasks in this group might differ from those of healthy counterparts. This study aimed to clarify age-related differences in psychosocial functioning in ACHD patients and determine the factors influencing anxiety and depression. Methods and Results: A total of 133 ACHD patients (aged 20–46) and 117 reference participants (aged 20–43) were divided in 2 age groups (20 s and 30 s/40 s) and completed the Hospital Anxiety and Depression Scale, Independent-Consciousness Scale, and Problem-Solving Inventory. Only ACHD patients completed an illness perception inventory. ACHD patients over 30 showed a significantly greater percentage of probable anxiety cases than those in their 20 s and the reference group. Moreover, ACHD patients over 30 who had lower dependence on parents and friends, registered higher independence and problem-solving ability than those in their 20 s, whereas this element did not vary with age in the reference participants. Furthermore, ACHD patients may develop an increasingly negative perception of their illness as they age. The factors influencing anxiety and depression in patients were aging, independence, problem-solving ability, and NYHA functional class. Conclusions: Although healthy people are psychosocially stable after their 20 s, ACHD patients experience major differences and face unique challenges even after entering adulthood. (Circ J 2015; 79: 185 – 192) Key Words: Adult congenital heart disease; Aging; Anxiety; Depression; Psychosocial functioning
R
emarkable advances in medical and surgical management have enabled many infants with congenital heart diseases (CHD) to survive into adulthood. Thus, the number of adult CHD (ACHD) patients has increased during the past few decades, outnumbering pediatric patients.1,2 Most ACHD patients have a longer life span than was previously possible, but must deal with different challenges compared with those who do not have the disease. Consequently, some studies are now focusing not only on medical support throughout patients’ lives, but also patients’ psychosocial functioning and quality of life (QOL). It has been established that there is a significant comorbidity of mental disorders with various physical conditions,3–5 particularly for older age groups.6 Therefore, comprehensive studies are required in order to explore the mental disorders of patients with chronic physical conditions, including age-related changes in their psychological functioning. Previous studies on the psychosocial features of ACHD patients were conducted by means of interview or questionnaire surveys,7–17 but results regarding the psychosocial state of patients have been inconsistent.18 According to some reports, psy-
chiatric diagnostic interviews with ACHD patients indicate that between one- and two-thirds of patients exhibit psychiatric issues such as anxiety and mood disorders.7–9 Meanwhile, the results of questionnaire studies vary considerably: some have shown symptoms of anxiety/depression and low emotional functioning (ie, low independence, low self-esteem),10,11 whereas other studies have shown that emotional functioning does not differ from that of healthy individuals.12–15 Furthermore, adult patients with cyanosis or who have undergone the Fontan procedure have shown a higher ratio of depressive symptoms.16,17 The reasons for these inconsistent findings may include differences in sample size, recruiting sources, sociocultural background, etc. However, 2 other issues remain: many investigations did not have specified reference groups and some psychological differences in healthy participants have not yet been ascertained.18 Moreover, clear-cut results have not been obtained because the effects of age were not taken into account, as the targeted age range of ACHD patients in previous studies has been very broad. A patient’s age may affect psychosocial health and QOL,6,19–21
Received June 24, 2014; revised manuscript received October 5, 2014; accepted October 6, 2014; released online November 13, 2014 Time for primary review: 48 days Faculty of Letters, Toyo University, Tokyo (J.E.); Pediatric and Lifelong Congenital Cardiology Institute, Southern Tohoku General Hospital, Koriyama (M.N.), Japan Name of Grant: JSPS Grants-in-Aid for Scientific Research (No. 22730556) to J.E. Mailing address: Junko Enomoto, PhD, Faculty of Letters, Toyo University, 5-28-20 Hakusan, Bunkyo-ku, Tokyo 112-8606, Japan. E-mail: [email protected] ISSN-1346-9843 doi: 10.1253/circj.CJ-14-0682 All rights are reserved to the Japanese Circulation Society. For permissions, please e-mail: [email protected] Circulation Journal Vol.79, January 2015
186
ENOMOTO J et al.
but comprehensive analyses of differences across age groups in ACHD patients have not been properly implemented. Because the tasks that patients must perform generally change with their developmental stage, the issues they must face will also change accordingly. Thus far, only minimal research has been conducted into the relationship between ACHD patients’ psychosocial functioning and age.19–21 In order to provide appropriate and effective support to patients, it is essential that we consider their developmental stage. Therefore, the present study used a reference group and aimed to (1) clarify how psychosocial functioning, such as the presence and severity of anxiety and depression, differ according to the age of ACHD patients’ and (2) determine the factors that influence ACHD patients’ anxiety and depression with age.
Methods Participants ACHD patients, all monitored by the same physician (M.N.), were recruited from the databases of 2 institutions: the Tokyo Clinic and the Southern Tohoku General Hospital in Japan. The inclusion criteria were as follows: (1) diagnosed with CHD and had medical records that could be reviewed; (2) able to read and complete the consent form and questionnaires, which were written in Japanese; and (3) between the ages of 20 and 49. The exclusion criteria were having any cognitive and/or physical limitations that would prevent the potential participant from filling out the questionnaires. The reference group consisted of 117 participants (65 women; age range 20–43 years) recruited from a local seminar, local universities, or who were parents of students at local schools. Procedure The 258 eligible patients received by mail an information letter, a set of questionnaires, and a stamped and addressed return envelope. An informed consent form was included and had to be personally signed by the patient. They were asked to complete the set of questionnaires themselves and to return them within 3 weeks. Informed consent was given by each patient and the study protocol was approved by the medical ethics committee of the Southern Tohoku General Hospital, Japan. Variables and Measures Demographic Variables and Disease Severity Demographic questions were included to obtain each participant’s age, sex, education level, condition of employment, marital status, and presence/absence of children. Based on the initial diagnosis or the specific type of operation, the cardiac defects were classified as being of “simple”, “moderate”, or “great” complexity in accordance with the definitions used in the 2008 ACC/AHA ACHD Guidelines.22 To assess current functional status, the New York Heart Association (NYHA) functional classes were used. They were grouped as NYHA I vs. NYHA II and III, because the numbers of patients classified as NYHA II and III were small. Hospital Anxiety and Depression Scale23 This scale measures the presence and degree of anxiety and depression symptoms. We used the Japanese version of this scale,24 which consists of 7 items (each rated on a 4-point scale from 0 to 3) for each of 2 subscales (anxiety and depression). Scores on each subscale range between 0 and 21. Scores of 0–7 correspond to not having anxiety or depression symptoms (hereafter, “no” case), 8–10 to “possible” anxiety or depression, and 11–21 to “probable” anxiety or depression. A higher score indicates a greater likelihood and severity of anxiety or de-
pression symptoms. Reliability scores (Cronbach’s alpha) were 0.83 for anxiety and 0.63 for depression. Independent-Consciousness Scale25 This scale was originally created in Japanese and measures the transition from dependence to independence in adolescents. For this study, 5 items were selected from 2 subscales: “Independence” (the ability to make decisions regarding one’s future and any difficulties encountered) and “Dependence on parents” (dependence on parents resulting from an inability to make one’s own decisions and the sense of security obtained from being with parents). Additionally, in order to measure their relationships with friends, a new subscale was created, called “Dependence on friends”, which we designed by replacing the word “parents” in all items on the “Dependence on parents” subscale with the word “friends”. The Independent-Consciousness scale, with the inclusion of the newly created subscale, included 15 items in total, each rated on a 5-point scale, as per the original version (and for all subsequent rating procedures). The average for each subscale was calculated and used in our analyses. Cronbach’s alphas were 0.72 for “Independence”, 0.86 for “Dependence on parents”, and 0.82 for “Dependence on friends”. Problem-Solving Inventory (PSI)26 The PSI measures the social skills used for effectively solving problems encountered in daily life. We used a Japanese translation,27 which comprises 32 items in the original version; however, we used a short version (14 items)11 of the scale, created by Heppner and Petersen. Items were rated on a six-point scale; the PSI score was calculated by averaging the 14 items. Cronbach’s alpha was 0.83. Illness Perception We assessed illness perception using a set of 12 items developed for this study, which were derived from previous research28 and qualitative interviews with ACHD patients in a pilot study. Items were rated on a 5-point scale. Through repeated factor analyses (using the maximum likelihood method with a promax rotation), 2 factors were extracted, each with 4 items. We eliminated 4 items because they either had small factor loadings in the post-rotation factor matrix or had high loadings with other factors. Cumulative contribution was 54.5% and the factor loading range of items was from 0.613 to 0.936 for the first factor and from 0.412 to 0.760 for the second factor. Cronbach’s alphas were 0.84 and 0.76, respectively. The first factor included items that assessed individuals’ negative perceptions of their illness (eg, “I cannot do what I want because of my illness.”), and thus was labeled “Negative perception”. The second factor included items that assessed individuals’ desires for their illness to be understood by friends and acquaintances (eg, “I want people around me to understand the seriousness of my illness.”), and thus was labeled “Desire to be understood”. This score was calculated by averaging each of the subscale items. Statistical Analysis Data analysis was conducted using SPSS version 20.0 for Windows (SPSS Japan Inc, Tokyo, Japan). To examine group differences, Fisher’s exact tests for categorical data were performed, together with t-tests and ANOVAs for continuous variables. To identify the associations between depression/ anxiety and other variables, Spearman’s correlation and hierarchical regression analysis were calculated. We performed hierarchical regression analysis for ACHD patients, with the dependent variables related to anxiety and depression and the explanatory variables organized in 4 blocks: demographics, illness perception, independent consciousness, and social problem solving. These 4 blocks were determined by reference to
Circulation Journal Vol.79, January 2015
Aging in ACHD
187
Table 1. Demographics of All Participants and Clinical Characteristics of Patients With ACHD Variable Age (years, mean±SD (range)) 20–29
ACHD patients, n (%)
Reference group, n (%)
P value
28.77±6.83
29.39±5.07
NS
88 (66.2)
56 (47.9)
30–46
45 (33.8)
61 (52.1)
Female
89 (66.9)
65 (55.6)
Ethnicity
Japanese
Japanese
106 (80.9)
110 (94.0)
Full-time worker
74 (55.6)
82 (70.1)
Part-time worker
18 (13.5)
6 (5.1)
4 (3.0)
1 (0.9)
Education level
NS 0.002
>High school education Employment
0.004
Unemployed Homemaker
20 (15.0)
6 (5.1)
Student
15 (11.3)
21 (17.9)
2 (1.5)
1 (0.9)
Married
43 (32.3)
47 (40.2)
Have child/children
33 (25.0)
34 (29.1)
Other Marital status
NS
I
NS 0.00
NYHA: total/20–29 years, 30–46 years* 119 (89.5)/80 (90.9), 39 (86.7)
II, III
14 (10.5)/8 (9.1), 6 (13.3)
efect complexity: total/20–29 years, D 30–46 years**
NS
Simple
35 (26.3)/22 (25.0), 13 (28.9)
Moderate
41 (30.8)/24 (27.3), 17 (37.8)
Great
57 (42.9)/42 (47.7), 15 (33.3)
*Fisher’s exact test for 2 age groups×NYHA was not significant. **Fisher’s exact test for 2 age groups×defect complexity was not significant. ACHD, adult congenital heart disease; NS, not significant; NYHA, New York Heart Association functional class.
a previous study.11 The significance level was set at P
