Change in quality of life of caregivers as patients with alcohol dependence undergo treatment
Original Article
Change in quality of life of caregivers as patients with alcohol dependence undergo treatment
Surendra Rajpurohit,1 Gauri Shanker Kaloiya,2 Siddharth Sarkar,3 Rakesh K. Chadda4
1Assistant Professor, Department of Psychiatry, Government Medical College, Pali, Rajasthan, India
2Professor of Clinical Psychology, NDDTC AIIMS, New Delhi, India
3Additional Professor, NDDTC AIIMS, New Delhi, India
4Ex-Professor Head Dept. of Psychiatry, NDDTC AIIMS, New Delhi, India
Address for Correspondence: Email ID: sidsarkar22@gmail.com
ABSTRACT
Objective: Alcohol use disorder has a substantial impact on patients’ caregivers and affects their quality of life. This study aimed to assess the change in quality of life of the caregivers while patients with alcohol dependence underwent treatment. Method: This was a prospective observational study in which treatment seeking men with alcohol dependence and their caregivers as dyads were recruited. Quality of life at baseline and at 6 weeks was assessed using WHO Quality of Life BREF Scale. Results: Of the 101 dyads recruited in the study, 60 could be followed up at 6 weeks. Significant improvement was seen in physical, psychological and environmental quality of life at 6 weeks compared to baseline (mean increment 10.6%, 22.2% and 5.8% respectively, all p <0.001). The social quality of life, however, did not show significant improvement. The improvement in quality of life scores was lesser in those caregivers where the patients had resumed alcohol use within the span of 6 weeks. Conclusion: Following treatment of alcohol dependence in the patient there is improvement in the quality of life of their caregivers. Lapse and relapse of alcohol use by the patient leads to less improvement in the quality of life of the caregivers, which should be taken into consideration during treatment.
Keywords: caregivers, quality of life, alcohol dependence disorder, treatment for substance.
INTRODUCTION
Worldwide, alcohol contributes 5.1% of the total global burden of diseases. Harmful use of alcohol contributed to around 5.9% of the overall mortality in the world in 2011. (Global Status Report on Alcohol and Health, 2014, 2014)
Family members play an important role in the care of a patient with substance use disorder, as they take care of the patient and also help the patient with engagement and retention in treatment. But while helping the patient in his/ her treatment, caregivers also have to experience the consequences that the addictive behavior has on them. (Mannelli, 2013) Quality of life is an important consideration in ascertaining the impact of patients’ substance use on the caregiver’s overall living condition. Similar to other chronic illnesses, substance use disorder also affects the quality of life of the patient as well as their family members.
Though quality of life of patients with sub- stance use disorder have been frequently assessed, there have been only a few studies assessing the impact of patient’s substance use disorder on their family member’s quality of life. (De Maeyer et al., 2011; Navabi et al., 2017) In a study done by Navabi et al, it was seen that quality of life of family members of patients with sub- stance use disorders was significantly affected in domains of physical, mental, social, and financial situations. (Navabi et al., 2017) Marcon et al, assessed caregivers of patients with substance use disorder using Medical Outcomes Studies 36 (SF-36) questionnaire. (Marcon et al., 2012) It was seen that the quality of life of the caregivers in the domain’s functional capacity, physical aspect, pain and vitality were more affected compared to the substance users them- selves. Livingston, assessed how the drinking of one household member affected those with whom they lived. (Livingston, 2009) It was seen that partners of high-risk drinkers had poorer social quality of life than caregivers of low-risk drinkers and ex-drinkers. A similar study was done by Livingston et al, to assess the degree to which relationships with heavy drinkers affect health and well-being of their caregivers. (Livingston et al., 2010) It was seen that there was a signifi- cant decrease in quality of life among caregivers whose partners were using alcohol, especially heavy drinkers. In a study done by Salize et al, assessing quality of life in caregivers of patients with alcohol use disorder using WHOQOL- BREF scale over 12 months, it was seen that the quality-of-life total scores increased from 60.6 to 68.0, resulting in a total gain of 7.4 Quality Adjusted Life Years (QALYs) in the family members. (Salize et al., 2013)
Thus, there is some literature which has assessed quality of life among family members of patients with alcohol use disorders, and the evidence is also indirect and cross-sectional. It is also imperative to see whether quality of life among family members changes with the treatment process which hasn’t been systematically evaluated. Such information would fill the research void of the indirect impact of treatment on family members. Thus, the present study planned to assess short-term changes in the quality of life of the caregivers of patients with alcohol use disorders following treatment.
METHODS
Setting and participants
This prospective type of study was done at the National Drug Dependence Treatment Centre, (NDDTC), Ghaziabad. It is a tertiary care centre involved in treatment of drugs and substance use disorders in India. Addiction treatment is provided through outpatient services, inpatient care and community clinics. A team of trained doctors, psychologists, social workers and nurses take care of the patient. A range of substances are encountered at the centre, though treatment is commonly sought for alcohol and opioid use disorders by the patient. A highly equipped laboratory facility is also present where basic investigations are carried out. Both pharma- cological and non-pharmacological approaches are used for treatment. For patients with alcohol use disorders, inpatient treatment largely focuses on detoxification, and outpatient services emphasize on relapse prevention. Often, family members of patients accompany them for treatment, and they are frequently involved in the supervision of treatment.
For this study, patients and their family members seeking treatment from an outpatient setting were recruited as dyads. Male patients between the ages of 18 and 65 years fulfilling the inclusion criteria for diagnosis of Alcohol Dependence (ICD 10), with regular use of alcohol of at least 12 units per day, had used alcohol for at least 20 days in the past month, were willing give informed consent and had not undergone treatment for at least the previous 3 months. Caregivers between 18 to 65 years of age group living with the patient for at least the previous 1 year were included if they gave informed consent. Those who fulfilled at least 3 of the following criteria were defined as caregivers: (1) Parent or spouse, (2) Had most frequent contact with the patient, (3) Helped to support the patient financially, (4) Accompanying the patient for treatment, (5) Had most frequently been a participant in patient’s treatment, and (6) Were to be contacted by treatment staff in case of an emergency. Exclusion criteria for the patient and caregiver were any self-reported medical illness (except uncomplicated diabetes and hyper- tension) or those with psychiatric illness and currently under treatment, presence of harmful use or dependence on another substance except tobacco, and a first-degree relative staying with the patient who had substance use disorder, psychiatric illness or chronic impairing medical illness. Patients having significant intoxication or withdrawal symptoms were also excluded.
Procedure
Those patients and their caregivers who fulfilled the inclusion and exclusion criteria were recruited after obtaining informed consent. Demographic and clinical profile data of the patients and their caregivers was collected. Alcohol Use Disorder Identification Test (AUDIT) was used to assess the degree of patients’ alcohol use during the baseline assess- ment. WHO quality of life BREF scale was used to assess the quality of life of the caregivers. Treatment of the patient was continued as usual.
After 6 weeks (±1 week) during their regular follow-up, patient’s drinking status was assessed and the same caregivers were re-assessed using WHOQOL BREF. The study had approval from the institute’s ethics committee.
Tools
Alcohol Use Disorder Identification Test (AUDIT) was developed by Saunders et al in 1993, and it is a 10-item brief instrument to assess for problem drinking. (Saunders et al., 1993) Each of the items is scored from 0 to 4. The total scores can range from 0 to 40. The instrument can be used as an interviewer administered or self-rated scale. It has high sensitivity and specificity, and has been found to be a reliable and valid measure of alcohol dependence.
WHOQOL BREF was applied on caregivers at baseline and follow-up. It is a self-rated questionnaire, consisting of 26 items and each question is rated on a 5-point Likert scale. It gives scores in 4 domains of quality of life - physical, psychological, social and environmental and takes around 5 to 8 minutes to administer. It assesses the perceptions of the individual in the context of their culture, value systems, and their personal goals, standards and concerns. WHOQOL-BREF is a shorter version of the original instrument WHOQOL, that is used in large-scale research studies. The Hindi version has been standardized by Saxena et al. (Saxena et al., 1998)
Data Analysis
Descriptive statistics was used to represent the demographic data and scores in the form of mean, standard deviation, percentage, and frequency. Interaction effects of resumption of drinking were assessed using between subject variation via repeated measures ANOVA. Per- protocol analysis was done, and missing value imputation or intention to treat analysis was not done. A p value of less than 0.05 was considered as significant.
RESULTS
During the study, 153 patients and their caregivers were approached of which 101 were recruited in the study. Among the 101 participants, 60 followed up at 6 ± 1 weeks. The reasons for dropout were that 31 patients didn’t continue treatment seeking during the subsequent weeks, seven caregivers couldn’t be contacted for follow-up, two caregivers refused consent during follow-up, and one patient had died as reported by the caregiver. No significant differences were seen in the demographic and clinical parameters of patients and caregivers who were retained compared to those who were not retained in the study.
Table 1
Demographic and clinical characteristics of the sample who followed up (n = 60)
Figure 1
Quality of life domain scores of the caregivers at baseline and follow-up (n=60)
Table 2
WHOQOL BREF of the caregivers at baseline and follow-up (n=60)
Exploratory analysis revealed that AUDIT scores had a weak significant correlation with base-line psychological quality of life (r = 0.263, p = 0.043), and other domains of quality of life were not correlated with AUDIT scores. Women caregivers had reported poorer quality of life as compared to male caregivers at baseline in all four domains of quality of life, i.e. physical (16.4 versus 14.3, p < 0.001), psychological (14.4 versus 10.8, p <0.001), social (16.6 versus 12.9, p = 0.002) and environmental (16.3 versus 12.8, p <0.001).
Patients’ drinking assessment showed that 20 participants remained abstinent during the 6 weeks of follow-up, whereas 40 participants lapsed or relapsed on at least one occasion of drinking. The mean number of days before the first drink in this sample of 40 patients was 10.0 (median 4.5, interquartile range 2 to 15 days), and the mean number of drinking days was 13.3 (median 7.5, interquartile range 4 to 21 days). Interaction of resumption of drinking and change in quality of life was assessed using the repeated measures paradigm, and is shown in table 3. It was seen that overall improvement in the quality of life domains occurred more in those caregivers, when the patient did not resume alcohol, and the interaction effects were all significant. It was also seen that lapse or relapse of alcohol use led to an overall decrement in social quality of life compared to an improvement of 13% in caregivers of patients who didn’t resume alcohol use. Also, there was more than two times improvement in the physical, psychological, and environmental quality of life in caregivers of patients who didn’t resume alcohol use compared to those who resumed alcohol use during follow- up.
Table 3
Interaction of resumption of drinking alcohol of patient and change in quality of life domain scores
DISCUSSION
The main findings of this study were that caregivers of those patients with alcohol depen- dence who were retained over the course of 6 weeks of treatment had a significant improvement in their quality of life in physical, psychological and environmental domains. Lapse and relapse of the patient’s alcohol use also plays an impor- tant role in the degree of improvement in quality of life of the caregivers. The main findings of this study were that caregivers of those patients with alcohol dependence who were retained over the course of 6 weeks of treatment had a signifi- cant improvement in their quality of life in physical, psychological and environmental domains. Lapse and relapse of the patient’s alcohol use also plays an important role in the degree of improvement in quality of life of the caregivers.
Women caregivers had reported poorer quality of life as compared to men at baseline in all four domains of quality of life. It has been seen in other studies that spouses having partners with alcohol use disorder experience more life stressors and have lower psychological quality of life than others. (Dawson et al., 2007) This could also be attributed to their significantly poor physical health because of neglect, social isolation, and withdrawal from family and friends. Other factors in the form of lack of support from the community due to gender bias, higher level of stress, conflict, and intimate partner violence due to alcohol use related behavior of the patient could also be responsible for poorer quality of life in female caregivers compared to male caregivers. AUDIT scores were negatively correlated with psychological quality of life scores of the caregivers, suggesting increasing severity of alcohol use in the patient was related with poorer psychological quality of life in the caregiver.
In the overall sample, social relationship domain of quality of life didn’t have any significant change during follow-up. Social relationship in this study signifies the extent to which caregivers feel companionship, love, and support they desire from their intimate relationship in their lives. This signifies that the majority of the burden or responsibility of the person which falls on the primary caregiver persists even after 6 weeks of treatment seeking. This may be due to the fact that as the duration of follow-up was only 6 weeks in this study, improvement in social relationship domain i.e. relationship with the patient and social support may require a longer duration of time for resolution of problems. It was also seen that lapse or relapse of alcohol use by the patient led to an overall decrement in social quality of life compared to an improvement of 13% in caregivers of patients who didn’t resume alcohol use. This suggests that continued alcohol use is one of the factors which affects the level of improvement in social domain of quality of life.
Quality of life is considered to be represen- tative of the ultimate goal of all health and illness related interventions. Caregivers while taking care of the patient’s alcohol use related behavior and dysfunction lead to the development of great demand and burden on them, resulting in a subsequent decrease in their quality of life. WHOQOL BREF scale measures quality of life in terms of the “individuals’ perceptions of their position in life in the context of the culture and value systems in which they live and in relation to their goals, expectations, standards and concerns”. Assessing the quality of life leads to the gain of insight into the degree of impact alcohol use by the patient has on their caregivers. It shows the level of impairment in the daily activities of the caregivers, physical health, psychological state and social relationships. This study showed that caregivers of patients with alcohol use disorder perceive that their physical and psychological health and their environment are significantly improved with treatment of the patient’s alcohol use, which is an important indicator of the efficacy and effectiveness of therapeutic measures. It also adds a humanistic element to treatment, where the patient and their caregiver’s well-being are the primary aim, not the mere decrease in symptoms, which is in line with the WHO definition of health.
In terms of the strengths and limitations of the study, the study did a systematic follow-up of the patients and their caregivers among treatment seeking population and also assessed the quality of life of the caregivers using standardized instrument. Patient’s resumption of alcohol use, role of gender of the caregiver were also considered as the factors which may influence the quality of life of the caregiver and its level of improvement. The limitations of the study were that the study sample was from a treatment seeking population in a tertiary care centre and not community based, the potential role of selection biases due to non-random non- systematic sample, respondent and observer biases; and heterogeneity of treatment (of patients and possibly caregivers) could not be controlled for. Also, the findings can be applied only to those dyads who were retained in treatment, and not to those who didn’t continue their follow-up.
CONCLUSION
Caregivers of those patients who are retained in the treatment have substantial improvement in their overall quality of life in several domains. However, the resumption of drinking nullifies some of the beneficial effects of treatment of the patient on quality of life of their caregivers. Clinicians should be aware of the effect that the treatment has not only on the patient but also on their caregivers. Public health specialists and administrators should also take into consideration the additional positive impact on the caregivers that the provision of treatment for alcohol use disorder has in addition to the drinking outcomes of the patient. Future multi-centric studies should look into the effect of treatment of the patient with alcohol dependence on caregiver’s quality of life in other treatment settings like community- based samples and the effect of medication while moderating the drinking status more robustly. Also, qualitative explo-ration of the perception of caregivers about their condition (including positive aspects of care-giving) can be explored as the patients engage in treatment.
Source of support: This research did not receive any specific grant from funding agencies in the public, commercial or not-for-profit sectors.
Conflict of Interest: No conflict declared
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Journal of Society for Addiction Psychology | Volume 1 | Issue 1 | March 2024 Page 53 - 59