Issues in Mental Health Nursing, 35:761–767, 2014 Copyright © 2014 Informa Healthcare USA, Inc. ISSN: 0161-2840 print / 1096-4673 online DOI: 10.3109/01612840.2014.908440
Quality of Life, Anxiety and Depression among Patients with Chronic Obstructive Pulmonary Disease and their Spouses Ekhlas Al-Gamal, RN, BSc, MSc, PhD
Issues Ment Health Nurs Downloaded from informahealthcare.com by McMaster University on 01/21/15 For personal use only.
The University of Jordan, Amman, Jordan
Chronic obstructive pulmonary disease (COPD) could have a negative impact on quality of life (QoL) and is associated with anxiety and depression in both patients and informal caregivers. The aim of this study was to examine the relationships between anxiety, depression and QoL of both Jordanian patients with COPD and their spouses. The selected design used in this study was a crosssectional, descriptive, correlational design. A total of 67 patients and spouses were interviewed in 2011, using self-administered questionnaires. Descriptive statistical analysis was applied. Bivariate correlation analysis was undertaken to examine the relationship between variables. The results showed that patients and spouses with high levels of anxiety and depression reported a poor QoL. Patients had a lower QoL than their spouses. A better understanding of patient and spouse psychological wellbeing and QoL will provide nurses with the information needed in terms of developing strategies for reducing patients’ and spouses’ anxiety and depression and thus improve their QoL. The health-service agencies and government should improve policy by improving family-centred services for both patients and spouses.
INTRODUCTION Chronic obstructive pulmonary disease (COPD), a debilitating illness punctuated by episodes of exacerbation and worsening dyspnoea, has a major impact on patient and spouse psychological distress (Ng et al., 2007; Yohannes, Baldwin, & Connolly, 2006) and their quality of life (QoL) (Kuhl, Schurmann, & Rief, 2008). The worldwide prevalence of COPD is 8–20%, and it is estimated to be the third leading cause of death by the year 2020 (Buist et al., 2007). It is estimated that the prevalence of COPD in the Middle East is 2.69 per 1,000 for men and 2.83 per 1,000 for women (Murray & Lopez, 1996). Despite the clinical relevance of anxiety, depression and impaired QoL for patients with COPD and their spouses, there is little evidence about how Jordanian patients and their spouses respond. While care services concentrate on the physical treatment of patients with COPD, less attention is paid to psychological wellbeing and QoL among Jordanian patients Address correspondence to Ekhlas Al Gamal, The University of Jordan, Amman, Jordan. E-mail: [email protected]
with COPD and their spouses. The purpose of this study was to examine the relationships between anxiety, depression and QoL of both Jordanian patients with COPD and their spouses. Patients with COPD are more likely to experience psychological distress (Kuhl et al., 2008; Yohannes et al., 2000). Kuhl et al. (2008) conducted a cross-sectional study in Germany to examine the most common psychological disorders in patients with COPD. The results revealed that the prevalence rates for anxiety and depressive disorders were higher than in the reference sample for patients with COPD. Moreover, it is known that COPD has a negative impact on patients’ health-related QoL (Jones et al., 2011; Ng et al., 2007). Jones et al. (2011) conducted a large scale survey to examine health-related QoL in 2,294 patients with COPD from five European countries. Results from this study revealed severe impairment of health-related quality in patients with COPD of all degrees of severity. The negative impact of COPD can be further complicated by the widespread presence of psychological comorbidity in patients with COPD. There is evidence that patients with high levels of psychological distress reported low levels of QoL (Kuhl et al., 2008; Yohannes et al., 2000). Patients with COPD with elevated depression scores show lower health-related QoL (Kuhl et al., 2008; Ng et al., 2007; Yohannes et al., 2006), more frequent hospital admission and increased mortality (Ng et al., 2007). Cleland, Lee and Hall (2007) conducted a cross-sectional study with 110 patients with COPD in the UK to examine the associations of depression and anxiety with demographic, health-related QoL and clinical characteristics of patients with COPD. Approximately one in five participants reported depression (20.8%) and one in three reported anxiety (32.7%). Depression is also associated with lower patient-reported generic health status. Recognition and treatment of depression and anxiety in patients with COPD may, therefore, lead to significant improvements in QoL and on the effectiveness of therapeutic interventions. Little is known about the impact of providing support for someone with COPD on the informal caregiver (Grant, Cavanagh, & Yorke, 2012). It is well-documented that spouses of patients with other severe and life-threatening illness, such as cancer, may encounter comparable psychosocial and emotional distress as the patients themselves (Hodges, Humphris,
761
Issues Ment Health Nurs Downloaded from informahealthcare.com by McMaster University on 01/21/15 For personal use only.
762
E. AL-GAMAL
& Macfarlane, 2005). However, very few COPD studies have addressed this issue (Kanervisto, Kaistila, & Paavilainen, 2007; Kuhl et al., 2008; Pinto, Holanda, Medeiros, Mota, & Pereira, 2007). Jordan is a family-centred society. It is expected that family members (mainly the spouse) will provide care for the patient. Spouses of patients with COPD need to meet the needs of the family, including looking after the household, treatment-related symptom management, and emotional and financial support (Ashmore, Emery, Hauck, & MacIntyre, 2005). As a consequence, spousal caregivers of patients with COPD can experience anxiety, depression and feelings of helplessness (Booth, Silvester, & Todd, 2003), as well as poor QoL and unmet needs (Kuhl et al., 2008). Few studies have measured COPD carers’ quality of life. In the general caregiver literature, carers are reported to have significantly lower levels of general subjective wellbeing than noncarers (Pinquart & Sorensen, 2003a). In turn, poorer physical and mental health can affect the person’s ability to care, resulting in strain within the caring relationship (Collins & Long, 2003). Support needs for caregivers may include financial, emotional, practical support; training, respite care and partnership working (Sandy, Kgole, & Mavudla, 2013). Most research to-date has focussed on the caregiver experience in the context of developed Western countries. Little attention has been paid to the experience of carers living in Arabic cultures. Research by Kuhl et al. (Germany), Jones et al. (European countries) and Cleland et al. (UK) indicate the international significance of the problem, as well as the urgent need for evidence on which to base practical interventions. Evidence of the effects for Arabic patients and their spouses in a Middle Eastern setting would add further to the breadth of understanding of the problem. The aim of this study was to examine the relationships between severity of anxiety, depression and QoL of both patients and their spouses. Ultimately, the aim is to help establish and improve policies for family-centred care services.
METHODS Design The selected design used in this study was a cross-sectional, descriptive, correlational design. This has the advantages of efficiency, the attrition of subjects is not an issue, and it is practical (Polit & Beck, 2008). Data were collected in 2011.
Setting Data were collected from patients with a medically confirmed diagnosis of COPD and their spouses. Participants were recruited from inpatient and outpatient clinics in three major hospitals in Jordan.
Population The target population of this study was all Jordanian patients with medically diagnosed COPD and their spouses. The accessible population was patients and their spouses in inpatient or outpatient departments in three large hospitals in Jordan. Non-probability convenience sampling was used. According to G-Power 3.0.3 (Faul & Erdfelder, 1992), with a medium effect size of 0.50, at a power of 0.80, and at 0.05 two-tailed level of significance, a total sample of at least 128 participants was needed (64 patients and 64 spouses). However, to overcome the likely problems of incomplete questionnaires, a larger sample of 150 participants was planned as a precaution (Polit & Beck, 2008). A total of 134 participants agreed to participate. The response rate was largely positive (89%). The inclusion criteria were that: the patient must be married, have a diagnosis of COPD confirmed by medical records and be able to read and understand Arabic. Both patients and spouses had to agree and be able to be interviewed separately. Patients or spouses with a diagnosis of cognitive or mental disorder, or who were not willing to be interviewed separately, were excluded.
Data Collection and Ethical Approval After gaining ethical approval from the Research Ethics Committee at the University of Jordan Faculty of Nursing and the participating healthcare institutions, suitable hospital wards and outpatient clinics for patients with COPD were located. A briefing session was held to discuss the study with the head nurse and other nursing staff. The head nurse helped with identifying eligible patients and spouses, introducing the study and distributing the invitation letter. Then patients and spouses who expressed an interest in participating telephoned the researcher. The researcher agreed with the patients and spouses on a time and place for the interview. Prior to completing the questionnaire, the researcher made sure that the participants understood the key points included in the information sheet and invited them to sign the consent form. All interviews were conducted in private rooms located in the hospital or outpatient clinics. The patients and spouses were asked to complete the questionnaire separately to ensure independent responses. The questionnaire consisted of two parts. The part for patients included: demographic data, Hospital Anxiety and Depression Scale (HADS) and Quality of Life Inventory – Pulmonary version (QLI-P). The part for spouses included: demographic data, HADS, and Quality of Life Inventory – Generic version (QLI-G). Participants were assured of their right to privacy and data were kept strictly confidential. No names or personal details were included, and each participant was given an identification code. All data were kept in a password-protected personal computer belonging to the researcher. All questionnaires were stored securely in a locked filing cabinet in a locked room, with access restricted to the principal researcher.
QoL, ANXIETY AND DEPRESSION AMONG PATIENTS WITH COPD AND THEIR SPOUSES
Issues Ment Health Nurs Downloaded from informahealthcare.com by McMaster University on 01/21/15 For personal use only.
Instruments Demographics Gender, age, educational qualifications, income, medical history and smoking history were collected for both patients and spouses. Since objective measures of disease severity, including lung function, were not collected, patients were requested to self-rate their current health status according to the following categories: ‘current health is very good’; ‘current health is good’; ‘current health is fair’; or ‘current health is poor’. Ferrans and Powers’ Quality of Life Index (QLI) The QLI (http://www.uic.edu/orgs/qli/) was used to measure the QoL of both patients and spouses (Ferrans & Powers, 1985). The Arabic Generic version of the QLI has been found to be reliable and valid for measuring QoL among Arabic clients (Halabi, 2006). Spouses completed the 66-item QLI generic version (QLI-G) and patients completed the 72-item QLI pulmonary version (QLI-P). Both versions include ‘satisfaction’ items (Part 1) and ‘importance’ items (Part 2). Patients and spouses were asked to rate their current QoL on a scale from 1 (Very dissatisfied) to 6 (Very satisfied) in Part I, and from 1 (Very unimportant) to 6 (Very important) in Part 2. Scores were calculated by weighing each satisfaction response with its paired importance response. Five QoL scores were calculated: (i) health and functioning; (ii) social and economic; (iii) psychological/spiritual; (iv) family and (v) total QoL. The possible range of scores for each sub-scale and total score are 0–30, with lower scores indicating poorer QoL. Both versions of the QLI are similar, however, a few items are added to the Pulmonary version: item 4 ‘Your ability to breathe without shortness of breath?’; item 35 ‘Your relief from coughing?’; and item 36 ‘The changes in your life that you have had to make because of your lung condition?’. In this study, Cronbach’s-α coefficients for patients and spouses were 0.98, 0.96, respectively, indicating excellent internal consistency reliability. Hospital Anxiety and Depression Scale (HADS) The HADS is a widely used tool for assessing psychological distress. Seven items measure anxiety with a score range of 0–21, and seven items measure depression with a score range of 0–21. Higher scores indicate greater emotional distress (Zigmond & Snaith, 1983). HADS scores of between 8 and 10 identify mild cases; 11–15 moderate cases; and 16 or above severe cases (Bjelland, Dahl, Haug, & Neckelmann, 2002). Cronbach’s-α coefficient was 0.884, indicating good reliability (Michopoulos et al., 2008). In this study, Cronbach’s-α coefficients for the total scale for patients and spouses were 0.87 and 0.83, respectively, indicating reasonable internal consistency reliability. Data Analysis Data were analysed using the Statistical Package for Social Science (SPSS) version 16 (SPSS; Chicago, IL). Descriptive
763
statistical analyses were conducted to describe the sample demographics and responses to each scale. The Pearson productmoment correlation coefficient (r) was used to assess associations between QoL, HADS and sample demographics. Munro (2005a) suggested that the correlation coefficient (r) can be employed to portray, mathematically, the relationship that exists between two variables. These tests were conducted separately for patients and spouses. The t-test for independent samples was used to test for differences between patient and spouse QoL and HADS scores. Munro (2005b) stated that the t-test assesses the statistical significance of the difference between two independent sample means. Statistical significance was set at p
Quality of Life, Anxiety and Depression among Patients with Chronic Obstructive Pulmonary Disease and their Spouses Ekhlas Al-Gamal, RN, BSc, MSc, PhD
Issues Ment Health Nurs Downloaded from informahealthcare.com by McMaster University on 01/21/15 For personal use only.
The University of Jordan, Amman, Jordan
Chronic obstructive pulmonary disease (COPD) could have a negative impact on quality of life (QoL) and is associated with anxiety and depression in both patients and informal caregivers. The aim of this study was to examine the relationships between anxiety, depression and QoL of both Jordanian patients with COPD and their spouses. The selected design used in this study was a crosssectional, descriptive, correlational design. A total of 67 patients and spouses were interviewed in 2011, using self-administered questionnaires. Descriptive statistical analysis was applied. Bivariate correlation analysis was undertaken to examine the relationship between variables. The results showed that patients and spouses with high levels of anxiety and depression reported a poor QoL. Patients had a lower QoL than their spouses. A better understanding of patient and spouse psychological wellbeing and QoL will provide nurses with the information needed in terms of developing strategies for reducing patients’ and spouses’ anxiety and depression and thus improve their QoL. The health-service agencies and government should improve policy by improving family-centred services for both patients and spouses.
INTRODUCTION Chronic obstructive pulmonary disease (COPD), a debilitating illness punctuated by episodes of exacerbation and worsening dyspnoea, has a major impact on patient and spouse psychological distress (Ng et al., 2007; Yohannes, Baldwin, & Connolly, 2006) and their quality of life (QoL) (Kuhl, Schurmann, & Rief, 2008). The worldwide prevalence of COPD is 8–20%, and it is estimated to be the third leading cause of death by the year 2020 (Buist et al., 2007). It is estimated that the prevalence of COPD in the Middle East is 2.69 per 1,000 for men and 2.83 per 1,000 for women (Murray & Lopez, 1996). Despite the clinical relevance of anxiety, depression and impaired QoL for patients with COPD and their spouses, there is little evidence about how Jordanian patients and their spouses respond. While care services concentrate on the physical treatment of patients with COPD, less attention is paid to psychological wellbeing and QoL among Jordanian patients Address correspondence to Ekhlas Al Gamal, The University of Jordan, Amman, Jordan. E-mail: [email protected]
with COPD and their spouses. The purpose of this study was to examine the relationships between anxiety, depression and QoL of both Jordanian patients with COPD and their spouses. Patients with COPD are more likely to experience psychological distress (Kuhl et al., 2008; Yohannes et al., 2000). Kuhl et al. (2008) conducted a cross-sectional study in Germany to examine the most common psychological disorders in patients with COPD. The results revealed that the prevalence rates for anxiety and depressive disorders were higher than in the reference sample for patients with COPD. Moreover, it is known that COPD has a negative impact on patients’ health-related QoL (Jones et al., 2011; Ng et al., 2007). Jones et al. (2011) conducted a large scale survey to examine health-related QoL in 2,294 patients with COPD from five European countries. Results from this study revealed severe impairment of health-related quality in patients with COPD of all degrees of severity. The negative impact of COPD can be further complicated by the widespread presence of psychological comorbidity in patients with COPD. There is evidence that patients with high levels of psychological distress reported low levels of QoL (Kuhl et al., 2008; Yohannes et al., 2000). Patients with COPD with elevated depression scores show lower health-related QoL (Kuhl et al., 2008; Ng et al., 2007; Yohannes et al., 2006), more frequent hospital admission and increased mortality (Ng et al., 2007). Cleland, Lee and Hall (2007) conducted a cross-sectional study with 110 patients with COPD in the UK to examine the associations of depression and anxiety with demographic, health-related QoL and clinical characteristics of patients with COPD. Approximately one in five participants reported depression (20.8%) and one in three reported anxiety (32.7%). Depression is also associated with lower patient-reported generic health status. Recognition and treatment of depression and anxiety in patients with COPD may, therefore, lead to significant improvements in QoL and on the effectiveness of therapeutic interventions. Little is known about the impact of providing support for someone with COPD on the informal caregiver (Grant, Cavanagh, & Yorke, 2012). It is well-documented that spouses of patients with other severe and life-threatening illness, such as cancer, may encounter comparable psychosocial and emotional distress as the patients themselves (Hodges, Humphris,
761
Issues Ment Health Nurs Downloaded from informahealthcare.com by McMaster University on 01/21/15 For personal use only.
762
E. AL-GAMAL
& Macfarlane, 2005). However, very few COPD studies have addressed this issue (Kanervisto, Kaistila, & Paavilainen, 2007; Kuhl et al., 2008; Pinto, Holanda, Medeiros, Mota, & Pereira, 2007). Jordan is a family-centred society. It is expected that family members (mainly the spouse) will provide care for the patient. Spouses of patients with COPD need to meet the needs of the family, including looking after the household, treatment-related symptom management, and emotional and financial support (Ashmore, Emery, Hauck, & MacIntyre, 2005). As a consequence, spousal caregivers of patients with COPD can experience anxiety, depression and feelings of helplessness (Booth, Silvester, & Todd, 2003), as well as poor QoL and unmet needs (Kuhl et al., 2008). Few studies have measured COPD carers’ quality of life. In the general caregiver literature, carers are reported to have significantly lower levels of general subjective wellbeing than noncarers (Pinquart & Sorensen, 2003a). In turn, poorer physical and mental health can affect the person’s ability to care, resulting in strain within the caring relationship (Collins & Long, 2003). Support needs for caregivers may include financial, emotional, practical support; training, respite care and partnership working (Sandy, Kgole, & Mavudla, 2013). Most research to-date has focussed on the caregiver experience in the context of developed Western countries. Little attention has been paid to the experience of carers living in Arabic cultures. Research by Kuhl et al. (Germany), Jones et al. (European countries) and Cleland et al. (UK) indicate the international significance of the problem, as well as the urgent need for evidence on which to base practical interventions. Evidence of the effects for Arabic patients and their spouses in a Middle Eastern setting would add further to the breadth of understanding of the problem. The aim of this study was to examine the relationships between severity of anxiety, depression and QoL of both patients and their spouses. Ultimately, the aim is to help establish and improve policies for family-centred care services.
METHODS Design The selected design used in this study was a cross-sectional, descriptive, correlational design. This has the advantages of efficiency, the attrition of subjects is not an issue, and it is practical (Polit & Beck, 2008). Data were collected in 2011.
Setting Data were collected from patients with a medically confirmed diagnosis of COPD and their spouses. Participants were recruited from inpatient and outpatient clinics in three major hospitals in Jordan.
Population The target population of this study was all Jordanian patients with medically diagnosed COPD and their spouses. The accessible population was patients and their spouses in inpatient or outpatient departments in three large hospitals in Jordan. Non-probability convenience sampling was used. According to G-Power 3.0.3 (Faul & Erdfelder, 1992), with a medium effect size of 0.50, at a power of 0.80, and at 0.05 two-tailed level of significance, a total sample of at least 128 participants was needed (64 patients and 64 spouses). However, to overcome the likely problems of incomplete questionnaires, a larger sample of 150 participants was planned as a precaution (Polit & Beck, 2008). A total of 134 participants agreed to participate. The response rate was largely positive (89%). The inclusion criteria were that: the patient must be married, have a diagnosis of COPD confirmed by medical records and be able to read and understand Arabic. Both patients and spouses had to agree and be able to be interviewed separately. Patients or spouses with a diagnosis of cognitive or mental disorder, or who were not willing to be interviewed separately, were excluded.
Data Collection and Ethical Approval After gaining ethical approval from the Research Ethics Committee at the University of Jordan Faculty of Nursing and the participating healthcare institutions, suitable hospital wards and outpatient clinics for patients with COPD were located. A briefing session was held to discuss the study with the head nurse and other nursing staff. The head nurse helped with identifying eligible patients and spouses, introducing the study and distributing the invitation letter. Then patients and spouses who expressed an interest in participating telephoned the researcher. The researcher agreed with the patients and spouses on a time and place for the interview. Prior to completing the questionnaire, the researcher made sure that the participants understood the key points included in the information sheet and invited them to sign the consent form. All interviews were conducted in private rooms located in the hospital or outpatient clinics. The patients and spouses were asked to complete the questionnaire separately to ensure independent responses. The questionnaire consisted of two parts. The part for patients included: demographic data, Hospital Anxiety and Depression Scale (HADS) and Quality of Life Inventory – Pulmonary version (QLI-P). The part for spouses included: demographic data, HADS, and Quality of Life Inventory – Generic version (QLI-G). Participants were assured of their right to privacy and data were kept strictly confidential. No names or personal details were included, and each participant was given an identification code. All data were kept in a password-protected personal computer belonging to the researcher. All questionnaires were stored securely in a locked filing cabinet in a locked room, with access restricted to the principal researcher.
QoL, ANXIETY AND DEPRESSION AMONG PATIENTS WITH COPD AND THEIR SPOUSES
Issues Ment Health Nurs Downloaded from informahealthcare.com by McMaster University on 01/21/15 For personal use only.
Instruments Demographics Gender, age, educational qualifications, income, medical history and smoking history were collected for both patients and spouses. Since objective measures of disease severity, including lung function, were not collected, patients were requested to self-rate their current health status according to the following categories: ‘current health is very good’; ‘current health is good’; ‘current health is fair’; or ‘current health is poor’. Ferrans and Powers’ Quality of Life Index (QLI) The QLI (http://www.uic.edu/orgs/qli/) was used to measure the QoL of both patients and spouses (Ferrans & Powers, 1985). The Arabic Generic version of the QLI has been found to be reliable and valid for measuring QoL among Arabic clients (Halabi, 2006). Spouses completed the 66-item QLI generic version (QLI-G) and patients completed the 72-item QLI pulmonary version (QLI-P). Both versions include ‘satisfaction’ items (Part 1) and ‘importance’ items (Part 2). Patients and spouses were asked to rate their current QoL on a scale from 1 (Very dissatisfied) to 6 (Very satisfied) in Part I, and from 1 (Very unimportant) to 6 (Very important) in Part 2. Scores were calculated by weighing each satisfaction response with its paired importance response. Five QoL scores were calculated: (i) health and functioning; (ii) social and economic; (iii) psychological/spiritual; (iv) family and (v) total QoL. The possible range of scores for each sub-scale and total score are 0–30, with lower scores indicating poorer QoL. Both versions of the QLI are similar, however, a few items are added to the Pulmonary version: item 4 ‘Your ability to breathe without shortness of breath?’; item 35 ‘Your relief from coughing?’; and item 36 ‘The changes in your life that you have had to make because of your lung condition?’. In this study, Cronbach’s-α coefficients for patients and spouses were 0.98, 0.96, respectively, indicating excellent internal consistency reliability. Hospital Anxiety and Depression Scale (HADS) The HADS is a widely used tool for assessing psychological distress. Seven items measure anxiety with a score range of 0–21, and seven items measure depression with a score range of 0–21. Higher scores indicate greater emotional distress (Zigmond & Snaith, 1983). HADS scores of between 8 and 10 identify mild cases; 11–15 moderate cases; and 16 or above severe cases (Bjelland, Dahl, Haug, & Neckelmann, 2002). Cronbach’s-α coefficient was 0.884, indicating good reliability (Michopoulos et al., 2008). In this study, Cronbach’s-α coefficients for the total scale for patients and spouses were 0.87 and 0.83, respectively, indicating reasonable internal consistency reliability. Data Analysis Data were analysed using the Statistical Package for Social Science (SPSS) version 16 (SPSS; Chicago, IL). Descriptive
763
statistical analyses were conducted to describe the sample demographics and responses to each scale. The Pearson productmoment correlation coefficient (r) was used to assess associations between QoL, HADS and sample demographics. Munro (2005a) suggested that the correlation coefficient (r) can be employed to portray, mathematically, the relationship that exists between two variables. These tests were conducted separately for patients and spouses. The t-test for independent samples was used to test for differences between patient and spouse QoL and HADS scores. Munro (2005b) stated that the t-test assesses the statistical significance of the difference between two independent sample means. Statistical significance was set at p
