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) 


The quality of life scores of the caregivers at baseline and follow-up are shown in table 2 and graphically depicted in figure 1. During the baseline  assessment  as  compared  to  others, Psychological  health  related  quality  of  life domain scores were the lowest. During follow- up,  caregivers had  significant improvement in physical,  psychological  and  environmental quality  of  life, but  not  social  quality  of  life. Maximum improvement was seen in psychological quality of life. 


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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