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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 actionablea p-value Decisionb
PLHIV (%) Providers (%)
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
  1. 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