Engagement in care is a key component of the HIV care cascade, yet there are knowledge gaps regarding how to assess HIV care engagement. This study aimed to develop a tool to assess HIV care engagement and to assess associations between HIV care engagement and quality of life (QOL) among African, Caribbean and Black (ACB) women living with HIV (WLWH). We conducted a cross-sectional survey with ACB WLWH across Ontario, Canada. We developed the ‘HIV Engagement in and Continuity of Care Scale’ (HECCS). We conducted exploratory factor analysis (EFA) and confirmatory factor analysis (CFA) to test the scale’s factor structure. We conducted structural equation modeling (SEM) with maximum likelihood estimation to examine the associations between the HECCS and QOL. EFA yielded four factors: access to care, care by doctor/health professionals, control of HIV care, and appointment timekeeping. The CFA of the HECCS demonstrated good model fit: χ2 (DF: 1; n = 173) = 1.175, p = 0.278; CFI: 0.998; Tucker-Lewis Index (TLI): 0.990; RMSEA: 0.032. The HECCS was associated with increased QOL. The model fit the data well: χ2 (DF: 31, n = 173) = 51.19, p = 0.013; CFI = 0.955; TLI = 0.934; RMSEA = 0.062. Engagement in and continuity of care is multifaceted. We recommend interventions to promote the institutional capacity to better engage ACB WLWH in HIV care.
GardnerEMYoungB. The HIV care cascade through time. Lancet Infectious Diseases2014; 14: 5–6.
2.
MacCarthySHoffmannMFergusonL. The HIV care cascade: models, measures and moving forward. J Int AIDS Soc2015; 18: 19395–19395.
3.
GardnerEMMcLeesMPSteinerJF. The spectrum of engagement in HIV care and its relevance to test-and-treat strategies for prevention of HIV infection. Clin Infect Dis2011; 52: 793–800.
4.
ChenWTWantlandDReidP. Engagement with health care providers affects self- efficacy, self-esteem, medication adherence and quality of life in people living with HIV. J AIDS Clin Res2013; 4: 256–256.
5.
HorstmannEBrownJIslamF. Retaining HIV-infected patients in care: where are we? where do we go from here?Clin Infect Dis2010; 50: 752–761.
6.
AdlerRVasiliadisABickellN. The relationship between continuity and patient satisfaction: a systematic review. Fam Pract2010; 27: 171–178.
7.
DolovichLRNairKMCiliskaDK. The diabetes continuity of care scale: the development and initial evaluation of a questionnaire that measures continuity of care from the patient perspective. Health Soc Care Community2004; 12: 475–487.
8.
CreeMBellNRJohnsonD. Increased continuity of care associated with decreased hospital care and emergency department visits for patients with asthma. Dis Manage2006; 9: 63–71.
9.
ShortellSM. Continuity of medical care: conceptualization and measurement. Med Care1976; 14: 377–391.
10.
FanVSBurmanMMcDonellMB. Continuity of care and other determinants of patient satisfaction with primary care. J Gen Intern Med2005; 20: 226–233.
11.
GreenbergGARosenheckRAFontanaA. Continuity of care and clinical effectiveness: treatment of posttraumatic stress disorder in the Department of Veterans Affairs. J Behav Health Serv Res2003; 30: 202–214.
12.
GreenbergGARosenheckRASeibylCL. Continuity of care and clinical effectiveness – outcomes following residential treatment for severe substance abuse. Medical Care2002; 40: 246–259.
13.
Al-AzriM. Continuity of care and quality of care – inseparable twin. Oman Med J2008; 23: 147–149.
14.
DegrooteSVogelaersDVandijckDM. What determines health-related quality of life among people living with HIV: an updated review of the literature. Arch Public Health2014; 72: 40–40.
15.
BeachMCRoterDLSahaS. Impact of a brief patient and provider intervention to improve the quality of communication about medication adherence among HIV patients. Patient Educ Couns2015; 98: 1078–1083.
16.
UlettKBWilligJHLinHY. The therapeutic implications of timely linkage and early retention in HIV care. AIDS Patient Care STDS2009; 23: 41–49.
17.
MugaveroMJLinHYAllisonJJ. Failure to establish HIV care: characterizing the “no show” phenomenon. Clin Infect Dis2007; 45: 127–130.
18.
WhettenKLesermanJWhettenR. Exploring lack of trust in care providers and the government as a barrier to health service use. Am J Public Health2006; 96: 716–721.
19.
ReifSGeonnottiKLWhettenK. HIV infection and AIDS in the deep South. Am J Public Health2006; 96: 970–973.
20.
PenceBWReifSWhettenK. Minorities, the poor, and survivors of abuse: HIV-infected patients in the US deep South. South Med J2007; 100: 1114–1122.
21.
DasguptaSOsterAMLiJ. Disparities in consistent retention in HIV care – 11 States and the District of Columbia, 2011–2013. MMWR Morb Mortal Wkly Rep2016; 65: 77–82.
22.
Canada PHAo. HIV and AIDS in Canada: surveillance report to December 31, 2008. Canada: Public Health Agency of Canada, Centre for Communicable Diseases and Infection Control, Surveillance and Risk Assessment Division, 2009.
23.
CesconAPattersonSChanK. Gender differences in clinical outcomes among HIV-positive individuals on antiretroviral therapy in Canada: a multisite cohort study. Plos One2013; 8: e83649–e83649.
24.
LogieCHJamesLTharaoW. HIV, gender, race, sexual orientation, and sex work: a qualitative study of intersectional stigma experienced by HIV-positive women in Ontario, Canada. PLoS Med2011; 8: e1001124–e1001124.
25.
LogieCJamesLTharaoW. Opportunities, ethical challenges, and lessons learned from working with peer research assistants in a multi-method HIV community-based research study in Ontario, Canada. J Empir Res Hum Res Ethics2012; 7: 10–19.
26.
LogieCHJamesLTharaoW. “We don't exist”: a qualitative study of marginalization experienced by HIV-positive lesbian, bisexual, queer and transgender women in Toronto, Canada. J Int AIDS Soc2012; 15: 17392–17392.
27.
WHO. WHO QOL-HIV brief, Geneva: WHO, 2002.
28.
SwendemanDIngramBLRotheram-BorusMJ. Common elements in self-management of HIV and other chronic illnesses: an integrative framework. AIDS Care2009; 21: 1321–1334.
29.
NigatuT. Integration of HIV and noncommunicable diseases in health care delivery in low- and middle-income countries. Prev Chronic Dis2012; 9: E93–E93.
30.
Byrne BM. Structural equation modeling with AMOS: basic concepts, applications, and programming. Routledge, New York, 2013.
31.
Mueller RO and Hancock GR. Best practices in structural equation modeling. In: Osborne JW (ed.) Best practices in quantitative methods. Thousand Oaks, CA: SAGE, 2008, pp.488–508.
32.
ChristakisDAWrightJAZimmermanFJ. Continuity of care is associated with well-coordinated care. Ambulatory Pediatr2003; 3: 82–86.
33.
HanninenJTakalaJKeinanen-KiukaanniemiS. Good continuity of care may improve quality of life in Type 2 diabetes. Diabetes Res Clin Pract2001; 51: 21–27.
34.
MinersAPhillipsAKreifN. Health-related quality-of-life of people with HIV in the era of combination antiretroviral treatment: a cross-sectional comparison with the general population. Lancet HIV2014; 1: e32–e40.
