What if we could give PLHIV more autonomy to choose?

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Respecting patient choice can lead to greater patient satisfaction[1] - and in turn can lead to better clinical outcomes and QoL[2][3]

They’re kind of directing where it’s going, but at the same time I have control over it. So if they tell me something and it doesn’t seem like something I want to do, I’ll go read about it, and then I’m like, okay, yes or no.[4] -PLHIV

Now I’m at a point where perhaps people should be all the time. I disagree with what my doctor is saying and I’m like, ‘‘No, I asked you for this information and you’re telling me this and I really want this information.’’ That’s the way I am now, but in the beginning I just sort of handed myself over, ‘‘You people know what’s going on, I don’t’’.[4] -PLHIV

There is a need for treatments that can exist in parallel to the individual lifestyles of PLHIV. Even the simplest of ART regimes can get in the way of everyday life.

Diversity is increasing in the HIV patient population in terms of age, race, ethnicity and gender.[5][6] Moreover, PLHIV can be prevented from adhering to treatment due to changes in routine, a hectic schedule or sleeping away from home[7] :

A more individualised treatment approach with collaboration, mutual responsibility and shared HCP patient goals is required[5]

Concerns of inadvertent disclosure can inhibit PLHIV from taking their medication in the company of others[8]

In some cases, its not because PLHIV forget to take their medication, but because they cannot afford the consequences of revealing their status[8]

Many PLHIV are experts of their own condition and hold valuable knowledge. They want to be involved in their own care:[5]

  • Patient engagement can improve treatment adherence, and in turn, clinical outcomes
  • Use of the valuable knowledge of PLHIV helps to strengthen the relationship between doctor and patient
  • Healthcare systems are becoming increasingly financially and time restricted – patients should be encouraged to engage in their treatment plans

Similarly to switching treatment because of physical events,[9] switching treatment due to mental, emotional and social needs can save lives, enhance outcomes[10][11] and ensure PLHIV have a life worth living

They’re kind of directing where it’s going, but at the same time I have control over it. So if they tell me something and it doesn’t seem like something I want to do, I’ll go read about it, and then I’m like, okay, yes or no.[12]

- PLHIV

Now I’m at a point where perhaps people should be all the time. I disagree with what my doctor is saying and I’m like, ‘‘No, I asked you for this information and you’re telling me this and I really want this information.’’ That’s the way I am now, but in the beginning I just sort of handed myself over, ‘‘You people know what’s going on, I don’t’’.[12]

- PLHIV

It may be time to look at the non-clinical adverse events of ART and consider the new possibilities of switching to a treatment that can change the way patients live with HIV

All images are for illustrative purposes only. Any person depicted is a model.

ABBREVIATIONS
ART: antiretroviral therapy; PLHIV: people living with HIV; QoL: quality of life.