An Assessment Of The Quality Of Life Of HIV/AIDS Patients And Their Families In Ghana During the Scale Up of Delivery of Antiretroviral Treatment

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An Assessment Of The Quality Of Life Of HIV/AIDS Patients And Their Families In Ghana During the Scale Up of Delivery of Antiretroviral Treatment J.Amponsah 2, C. Machingauta 3, B. Ocran 2, S. A. Addo 1, S. Ahmed 2, B.Dornoo 1, H. Kazianga 5, R.A.Selby 2, S. Sory 2, M. Over 4, N.A. Addo 1, D. dewalque 3, J. O.Gyapong 2 1 NACP -Ghana, 2 Research &Development Division-Ghana Health Service, 3 World Bank Development Research Group, 4 Center for Global Development, 5 Oklahoma State University 1

Overview Background Hypothesis Findings Ghana TAP Survey Quantitative Analysis Results Conclusions 2

Background Globally, Africa s AIDS burden; 67% of all PLWHA in SSA 72% of all AIDS related deaths in 2008(WHO,2010) Absenteeism, Limited healthcare facilities; 2000-2009 : Average 2 physicians per 10000 people 9 hospital beds per 10000 people (WHO,2010) 3

Background Country level; Limited access to ART, 46% estimated coverage in Ghana 2009, 15.6% in 2007 (WHO,2010) Effect on Households; Without ART, untrained/constrained family likely to play significant caregiving role 4

Hypothesis Impact on households and individuals? Patient : HIV+ individual Family: Household members residing with HIV+ individual HIV/AIDS on patient health :Direct & negative HIV/AIDS on family member health : negative Spillover ART intake : patient health improves Family member health? We hypothesize that antiretroviral therapy, to the extent that it improves the patient s health, will also improve the mental wellbeing of caregivers 5

Findings Our novel empirical findings are that, in comparison to neighbors, family caregivers of AIDS patients; Are indistinguishable on measures of physical health Suffer a deficit in mental well-being Benefit psychologically in relation to the time the patient spends on ART 6

Ghana TAP Survey Rand Medical Outcomes Survey Instrument 507 identified patients on ART, 415 family members and 387 neighbors, all 15yrs+ 5 month intervals between 2007 and 2008 Patients recruited from health facilities from 9/10 regions in Ghana 7

Ghana TAP Survey e.g. of Survey Questions: How much bodily pain have you generally had during the past 4 weeks? How often have you felt like crying in the past month 8 physical and 8 mental health indexes ranging from 0-100 (100 for optimal health) Cronbach s Reliability : 0.92 8

Physical and Mental Health Indexes Physical Health Indexes Mental Health Indexes Physical Functioning Anxiety Satisfaction with physical functioning Mental Health Index Role limitations due to physical health Psychological Wellbeing Mobility Psychological Distress Pain Severity Depression/Behavioral Emotional Control Pain Role limitations due to emotional problems Effects of pain Positive Affect Cognitive functioning Feelings of belonging 9

Quantitative Analysis Bivariate Analysis Multivariate cross section regressions Controls: HIV Status age, marital status, household head, education, Greater Accra region Multivariate panel regression Controls: HIV Status, survey round and individual fixed effects Standard errors clustered at health facility level 10

Results Table 1: Physical Health Bivariate Statistics At Baseline Neighbor Family Patient mean mean mean p1(n&f) p2(f&p) p3(n&p) Physical Functioning 91.43 89.62 80.76 0.234 0.000 0.000 Satisfaction with 90.08 89.80 83.28 0.799 0.000 0.000 physical Functioning Mobility 96.47 94.45 92.86 0.061 0.162 0.001 Effects of Pain 84.32 83.75 79.76 0.430 0.000 0.000 Pain Severity 86.46 87.63 78.44 0.432 0.000 0.000 Pain 90.24 89.85 82.37 0.752 0.000 0.000 Role Limitations due to 87.96 87.63 73.58 0.862 0.000 0.000 physical health Role Limitations (s.f) 86.50 86.44 71.18 0.976 0.000 0.000 Patients report the lowest physical health indexes 11

No significant difference between family and neighbor physical health Table 2: Physical Health Bivariate Statistics At Follow up Neighbor mean Family mean Patient mean p1 (N&F) p2(f&p) p3(n&p) Physical Functioning 92.87 92.58 87.34 0.830 0.000 0.000 Satisfaction with 92.97 92.19 87.73 0.422 0.000 0.000 physical Functioning Mobility 96.15 96.93 95.51 0.441 0.129 0.524 Effects of Pain 86.02 85.58 83.14 0.394 0.000 0.000 Pain Severity 93.95 93.02 88.35 0.405 0.000 0.000 Pain 94.44 93.86 90.81 0.550 0.003 0.001 Role Limitations due to 93.96 92.01 84.70 0.206 0.000 0.000 physical health Role Limitations (s.f) 92.99 90.66 82.99 0.184 0.000 0.000 12

Families psychologically burdened at baseline Table 3: Mental Health Bivariate Statistics At Baseline Neighbor mean Family mean Patient mean p1 (N&F) p2(f&p) p3(n&p) Cognitive Functioning 84.42 83.83 77.57 0.577 0.000 0.000 Mental Health 85.61 82.77 75.55 0.001 0.000 0.000 Psychological Distress 89.76 86.82 79.26 0.001 0.000 0.000 Depression/Behavioral 89.66 86.86 79.03 0.002 0.000 0.000 emotional control Anxiety 89.25 85.56 78.86 0.001 0.000 0.000 Psychological Wellbeing 76.61 73.70 67.33 0.007 0.000 0.000 Positive Affect 74.92 71.82 64.93 0.007 0.000 0.000 Feelings of Belonging 80.17 78.62 73.12 0.251 0.000 0.000 13

Family psychological burden unobservable at follow up Table 4: Mental Health Bivariate Statistics At Follow up Neighbor mean Family mean Patient mean p1 (N&F) p2(f&p) p3(n&p) Cognitive Functioning 86.97 86.52 83.20 0.647 0.001 0.000 Mental Health 85.63 84.94 80.33 0.381 0.000 0.000 Psychological Distress 90.70 89.84 85.05 0.265 0.000 0.000 Depression/Behavioral 90.57 89.50 84.66 0.160 0.000 0.000 emotional control Anxiety 90.27 89.58 84.89 0.465 0.000 0.000 Psychological Wellbeing 74.40 74.30 70.02 0.932 0.000 0.000 Positive Affect 72.56 72.80 67.74 0.845 0.000 0.000 Feelings of Belonging 78.92 77.34 75.17 0.272 0.097 0.006 14

75 80 85 90 95 Evolution of Physical Health Figure 1 Physical Functioning 1..About 6 Months of ART.. 2 Phase Patients Family of Patient Neighbors 95% CI Patients 95% CI Family 95% CI Neigh 15

78 80 82 84 86 Figure 2 Effects of Pain 1..About 6 Months of ART 2 Phase Patients Family of Patient Neighbors 95% CI Patients 95% CI Family 95% CI Neigh 16

75 80 85 90 Evolution of Mental Health Figure 3 Mental Health STATISTICAL SIGNIFICANCE 1..About 6 Months of ART 2 Phase Patients Family of Patient Neighbors 95% CI Patients 95% CI Family 95% CI Neigh 17

75 80 85 90 95 Figure 4 Psychological Distress STATISTICAL SIGNIFICANCE 1..About 6 Months of ART 2 Phase Patients Family of Patient Neighbors 95% CI Patients 95% CI Family 95% CI Neigh 18

Table 5: Cross Sectional Analysis of Physical Health at Baseline VARIABLES Physical Functioning Satisfaction with Physical Functioning Mobility Effects of Pain Severity of pain Role Limitations due to Physical Health Family of Patient -2.642 1.72-2.726-1.425 1.374 4.916** [2.715] [1.428] [2.025] [1.131] [1.802] [2.321] Patient -8.035** -3.324** -2.014* -2.408** -0.847-7.584 [3.908] [1.356] [1.038] [1.172] [3.553] [6.232] Observations 1083 1083 1083 1081 1089 1085 R-squared 0.226 0.149 0.116 0.128 0.13 0.173 *** p<0.01, ** p<0.05, * p<0.1 Robust Standard errors in parentheses Also controlling for HIV Status age, marital status, household head, education, Greater Accra region 19

At Baseline: Physically, patients fare worse than neighbors Families generally no different from neighbors 20

Table 6: Cross Sectional Analysis of Mental Health at Baseline Depression- VARIABLES Cognitive Functioning Mental Health Index1 Psychological Distress 1 Behavioral /Emotional control Anxiety Psychological Wellbeing 1 Positive Affect Feelings of Belonging Family of Patient -0.178-4.295*** -4.322*** -4.134*** -4.355*** -4.778*** -4.759*** -3.018 [0.926] [1.344] [1.272] [1.227] [1.359] [1.557] [1.484] [2.464] Patient -2.195-6.832*** -6.638*** -7.033*** -5.964** -7.393*** -8.199*** -5.064* [1.945] [2.095] [1.920] [1.883] [2.529] [2.633] [2.767] [2.661] Observations 1082 1082 1082 1082 1082 1082 1082 1082 R-squared 0.140 0.194 0.180 0.193 0.138 0.154 0.157 0.126 *** p<0.01, ** p<0.05, * p<0.1 Robust Standard errors in parentheses, age controls included Also controlling for HIV Status age, marital status, household head, education, Greater Accra region Mentally, patients and family members not as healthy as neighbors 21

Table 7: Panel Regression, Individual Fixed effects Physical Health Role Satisfaction. Limitations with due to Physical Physical Effects of Severity Physical VARIABLES Functioning Functioning Mobility Pain of pain Health Follow up 1.997*** 2.765*** -0.676 1.787*** 8.186*** 6.806*** [0.379] [0.755] [0.798] [0.181] [0.536] [1.298] Family at Follow up 1.504-1.095 3.800** -0.00548-2.815-4.883** [3.156] [0.973] [1.574] [1.623] [1.745] [1.93] Patient at Follow -up 5.410*** 2.233** 2.005 0.894-0.797 5.241 [1.954] [0.932] [1.506] [0.743] [1.818] [3.473] Constant 48.97*** 98.50*** 129.8*** 81.98*** 53.13*** 87.72*** [12.49] [2.284] [2.424] [4.555] [12.45] [8.539] Observations 2292 2292 2292 2290 2298 2294 R-squared 0.148 0.125 0.104 0.101 0.17 0.142 unique observations 1200 1200 1200 1200 1200 1200 *** p<0.01, ** p<0.05, * p<0.1 Robust Standard errors in parentheses, age controls included Standard Errors clustered at Health Facility level 22

At Follow up: Family members improve more than neighbors in Mobility and less in Role Limitations Additional improvement for Patients in Physical functioning and Satisfaction with Physical Functioning 23

Table 8 : Panel Regression, Individual Fixed Effects Mental Health Depression- Cognitive Mental Health Behavioral Psychological /Emotional VARIABLES Functioning Index1 Distress 1 control Anxiety Psychological Wellbeing 1 Follow up 3.544*** 0.869** 1.952*** 1.614*** 2.520*** -1.690** - 1.90 [0.998] [0.437] [0.361] [0.38] [0.354] [0.674] [0.5 Family (Follow up) 0.223 0.132 0.148-0.312 0.813 0.754 1.18 [0.684] [1.712] [1.763] [1.824] [1.59] [1.377] [1.3 Patient at Follow -up 1.386** 2.982* 2.651** 3.510** 1.316 3.821* 4.09 [0.531] [1.598] [1.309] [1.596] [1.049] [2.259] [2.2 Female Patient at Follow up 0.818 1.526* 1.819* 1.024 3.023** 1.157 1.49 [1.487] [0.907] [0.963] [1.02] [1.274] [1.208] [1.3 Female Family (Follow up) -0.0136 2.083*** 1.906*** 2.273*** 2.076*** 2.210*** 2.25 [0.835] [0.576] [0.696] [0.659] [0.605] [0.661] [0.6 Constant 31.08*** 71.39*** 73.21*** 74.14*** 50.70*** 72.82*** 76.8 [2.894] [1.508] [1.86] [2.214] [1.93] [3.025] [4.0 Observations 2291 2291 2291 2291 2291 2291 229 R-squared 0.143 0.112 0.138 0.13 0.132 0.071 0.07 Unique Observations 1199 1199 1199 1199 1199 1199 119 *** p<0.01, ** p<0.05, * p<0.1 24 Pos Affe

At Follow up: Additional improvement for female family compared to male family in 7 indexes Additional improvement for Patients in 6 of the 8 indexes Suggests psychological burden for patients at baseline, that wears off with ART 25

Conclusions As expected, time on ART alleviates the deficits in mental and physical well-being suffered by AIDS patients relative to their families and neighbors 26

Conclusions In comparison to neighbors, family caregivers of AIDS patients; Are indistinguishable on measures of physical health Suffer a deficit in mental well-being Benefit psychologically in relation to the time the patient spends on ART 27

Acknowledgements We are grateful for funding from the Dutch Government via the Bank Netherlands Partnership Program (BNPP), and the Hewlett Foundation for grant support through Trust Fund TF070424 given to the World Bank. Mead Over acknowledges the support of a grant to the Center for Global Development from the Bill and Melinda Gates Foundation 28