Content validation of a new measure of patient-reported barriers to antiretroviral therapy adherence, the I-Score: results from a Delphi study

Engler, Kim; Vicente, Serge; Mate, Kedar K. V.; Lessard, David; Ahmed, Sara; Lebouché, Bertrand

doi:10.1186/s41687-022-00435-0

Journal of Patient-Reported Outcomes

Table 3 Item importance and actionability for HIV care for PLHIV (n = 40) and providers (n = 57) and decisions

From: Content validation of a new measure of patient-reported barriers to antiretroviral therapy adherence, the I-Score: results from a Delphi study

Item	Conceptual framework Domain Subdomain	Item is important and actionable^a		p-value	Decision^b
Item	Conceptual framework Domain Subdomain	PLHIV (%)	Providers (%)	p-value	Decision^b
My activities: Lifestyle factors
Demands and organization of daily life
1	A change to my daily routine	33	63	0.01	Undecided
2	Travelling	50	56	0.55	Undecided
3	The weekend	20	33	0.15	Rejected
4	Forgetting	58	88	0.01	Retained
5	Work or school	33	40	0.43	Rejected
6	Home or family responsibilities	38	54	0.10	Rejected
7	An irregular or unpredictable schedule	55	79	0.22	Retained
8	Being too busy	40	53	0.01	Rejected
9	Not being at home	53	63	0.29	Retained
10	My medication schedule conflicting with my sleep pattern	43	72	0.01	Undecided
11	My medication schedule conflicting with my eating pattern	33	61	0.01	Undecided
12	Having other priorities in my life than taking my medication	33	82	0.01	Undecided
13	My medication schedule conflicting with my daily activities	35	79	0.01	Undecided
14	Having trouble fitting my medication into my daily life	40	86	0.01	Undecided
Substance use
15	Drinking alcohol	33	58	0.01	Rejected
16	Using recreational/party drugs	40	72	0.01	Undecided
My thoughts and feelings: Cognitive and emotional aspects
Knowledge
17	Not being informed enough about my medication	55	65	0.32	Retained
18	Not being sure how to take my medication	50	75	0.01	Retained
Motivation
19	Not feeling motivated to take my medication	65	88	0.01	Retained
20	Wanting control over when I take my medication	40	32	0.39	Rejected
21	Wanting control over if I take my medication	45	61	0.11	Undecided
Acceptance of HIV
22	Not wanting to think about having HIV	40	77	0.01	Undecided
23	Having trouble accepting that I have HIV	53	89	0.01	Retained
Beliefs
24	Worrying about becoming dependent on my medication	40	30	0.30	Rejected
25	Feeling it is not natural for my mind and body to be taking medication	43	65	0.03	Undecided
26	Feeling I can catch up with missed doses	35	54	0.06	Rejected
27	Feeling medication is only for when you feel sick	43	81	0.01	Undecided
28	Feeling that stopping my medication for a while is only normal	45	74	0.01	Undecided
29	Feeling that I must take my medication my way	48	60	0.24	Undecided
30	Doubting my medication's effects on HIV	38	79	0.01	Undecided
31	Being reminded about HIV when taking my medication	48	67	0.06	Undecided
32	Feeling my medication is toxic or harmful	55	88	0.01	Retained
33	Feeling like I have no control over my health	50	49	0.93	Undecided
34	Worrying about taking my medication with recreational/ party drugs or alcohol	35	54	0.06	Rejected
35	Having trouble trusting my medication	40	65	0.02	Undecided
36	Having trouble trusting the healthcare system	38	65	0.01	Undecided
37	Doubting that I need my medication	38	81	0.01	Undecided
38	Struggling to accept that my medication has both good and bad sides	50	74	0.02	Retained
39	Thinking that HIV is a death sentence	48	42	0.60	Rejected
40	Worrying about becoming resistant to my medication	45	33	0.24	Rejected
Affect
41	Feeling sad or depressed	60	86	0.01	Retained
42	Being afraid	48	65	0.09	Undecided
43	Being angry	38	60	0.03	Undecided
44	Being worried or anxious	45	56	0.28	Rejected
45	Feeling stressed out	50	56	0.55	Undecided
46	Having mixed (ambivalent) feelings	40	51	0.29	Rejected
47	Feeling discouraged	55	72	0.09	Retained
48	Being tired of taking my medication every day	65	95	0.01	Retained
My health: Health experience and state
Bodily signals
49	Feeling well	38	19	0.05	Rejected
50	Feeling unwell	50	67	0.10	Retained
51	My body telling me I should not take my medication	40	61	0.04	Undecided
52	Feeling my body needs a break from my medication	43	72	0.01	Undecided
Medical signs of HIV and general health
53	Getting good test results (viral load or CD4 cell count)	33	16	0.05	Rejected
54	Getting discouraging test results (viral load or CD4 cell count)	58	63	0.57	Retained
55	Having no symptoms of HIV	35	46	0.30	Rejected
56	Having symptoms of HIV	45	32	0.18	Rejected
57	Being too sick or ill	60	60	0.97	Retained
Comorbidity
58	Having medications to take other than those for HIV	40	54	0.16	Rejected
59	Having another health condition to deal with (for example, depression. diabetes or heart disease)	70	74	0.69	Retained
My situation: Social and material context
Relations with others
60	Not getting the support I need from others	55	72	0.09	Retained
61	Feeling isolated or alone	55	82	0.01	Retained
62	Having relationship problems with someone close to me (for example, conflict or loss)	53	65	0.22	Retained
63	Others discouraging me from taking my medication	33	60	0.01	Undecided
64	Being with friends or family	33	37	0.66	Rejected
65	Feeling unloved or unneeded	45	65	0.05	Undecided
HIV stigma and privacy concerns
66	Not wanting others to notice that I take this medication	48	88	0.01	Undecided
67	Being concerned about stigma or discrimination related to HIV	60	88	0.01	Retained
68	Fearing rejection because of HIV	58	79	0.02	Retained
69	Having privacy or confidentiality concerns related to HIV at my clinic	38	67	0.01	Undecided
Challenging material circumstances
70	Having financial problems	40	79	0.01	Undecided
71	Not having a stable or suitable place to live	63	93	0.01	Retained
72	Having trouble getting food or the right kind of food	58	82	0.01	Retained
My medication: Characteristics of antiretroviral therapy
Side effects
73	Worrying about the long-term side effects of my medication	53	63	0.29	Retained
74	Anticipating side effects	38	53	0.14	Rejected
75	Having side effects from my medication	55	95	0.01	Retained
76	Having side effects that interfere with my daily activities	63	91	0.01	Retained
77	Worrying about my medication’s effects on my physical appearance	55	68	0.18	Retained
Instructions
78	My medication's instructions being too hard to follow	35	54	0.06	Rejected
79	Needing to plan when I eat or find water to properly take my medication	30	58	0.01	Rejected
80	Having to take my medication at specific times	38	67	0.01	Undecided
81	Finding I have too many pills to take for HIV	43	70	0.01	Undecided
Physical features
82	Finding the pills too large	38	68	0.01	Undecided
83	Having difficulty swallowing my medication	48	70	0.02	Undecided
84	Not liking the taste of my medication	25	51	0.01	Rejected
85	Having a problem with the form of the medication (pill. liquid. injection)	30	53	0.03	Rejected
My care: Healthcare services and system
Patient-provider relationship
86	Having trouble trusting my primary provider	48	74	0.01	Undecided
87	My primary provider having an unsupportive or negative attitude	53	82	0.01	Retained
88	Not being given enough information by my primary provider about my medication or how to take it	50	84	0.01	Retained
89	Having difficulty talking enough with my primary provider	48	70	0.02	Undecided
90	Feeling pressured or powerless with my primary provider in decisions about my health	50	79	0.01	Retained
HIV clinic issues
91	Having difficulty getting an appointment at my clinic at the right time	38	67	0.01	Undecided
92	Feeling the services at my clinic are not adapted enough to my needs	38	53	0.14	Rejected
93	My clinic's opening hours not being convenient	28	65	0.01	Undecided
94	Having trouble getting to my clinic	38	63	0.01	Undecided
Pharmacy issues
95	The pharmacy being out of my medication	35	67	0.01	Undecided
96	The pharmacy’s opening hours not being convenient	20	49	0.01	Rejected
97	Not getting the explanations I need from the pharmacist	38	72	0.01	Undecided
98	Having other complaints about the pharmacy services	15	23	0.34	Rejected
99	Having trouble getting to the pharmacy	30	51	0.04	Rejected
Drug cost coverage
100	Not having insurance to cover my medication costs or not having enough coverage	60	88	0.01	Retained

^aBased on scores of 3 (quite) or 4 (very) on both importance and actionability. ^bRetained: at least 50% of PLHIV and 60% of providers rated each item 3 or 4 on importance and actionability; Rejected: fewer than 50% of PLHIV and fewer than 60% of providers rated each item 3 or 4 on both aspects; Undecided: only one group reached the threshold for retention. In bold: items and decisions in bold indicate retained items, while p-values in bold indicate statistically significant group differences in an item's importance and actionability between PLHIV and providers

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