Why following instructions is essential for treatment success (and why this is really difficult)

 

Clara Hausmann, Mental mHealth Lab / Chair of Applied Psychology, Karlsruhe Institute of Technology



When visiting your doctor due to a simple cold you’ve caught, you will probably get the following advice: Get a rest from work, stay in bed for a week, drink a lot of herbal tea and go for a slow walk once a day. Well, you might follow the advice as you’ve been told. But possibly, you can’t stand tea or you are currently under pressure to finish some urgent work and anyway, you don’t feel that bad anymore after one day in bed. The degree to which a patient correctly follows medical advice is called compliance.

            Compliance is also an important term in the psychological and medical research, we are conducting – especially in our ambulatory settings where patients are treated outside of the hospital. In contrast to doing research in very well controlled laboratory settings, embedding research into everyday life  avoids  a lot of methodological disadvantages. For example, participants’ behavior won’t be biased by the presence of a researcher or the artificial situation in the lab. Another great feature of ambulatory assessment lays within the opportunity to gather real time or near real time data. Participants will be regularly asked about their current state of mind, so researchers don’t have to take into account the inaccuracy of patients’ retrospective reports [1] .  Still, we are facing some difficulties when using ambulatory settings – reaching a good compliance is part of it.

            In the CoCA PROUD study, for instance, we are ambulatorily monitoring our ADHD-diagnosed participants’ mental and physical state. Therefore, they are equipped with a smartphone and a small activity sensor. Participants keep an eDiary, by fulfilling repeated questionnaires on the smartphone while the activity sensor on their wrists measures physical activity. Meanwhile, they will take part in some non-pharmalogical interventions (daily physical exercise training or bright light therapy), which promise to alleviate some core symptoms of ADHD and it’s comorbidities such as depression.

            In this study, „compliance“ is what we call the percentage of prompts, that were answered, in order to fulfill the eDiary. All in all, participants receive four prompts per day, including questions about their current mood, social context and ADHD symptomatology. Furthermore, we can analyze how often the sensor was worn. Additionally, checking for the compliance during the interventions allows us to calculate how much time was spend on actively carrying out the instructions (e.g. doing strengthening and aerobic exercises).

In general, we aim to reach a good compliance. The more our participants contribute, the better the quality of data and the understanding of ADHD can be. However, one can imagine that general facts of life such as situational distraction or simple forgetting can be a hindrance for participants, to answer prompts [2].  Apart from this, researchers must be aware, that ambulatory assessment is inherently disruptive to participants’ daily lives. For instance, the activity trackers that participants wear are quite big, and getting daily prompts from the eDiary can be a real nuisance. The art lies in the design of the research: It is unquestionably essential to find a good balance between participants’ expenditure in time and energy and the amount and quality of data collected [3]. In order to find this balance, we’re always first testing the research study on ourselves to check for the feasibility, comfort, and ease of participation.

            Besides that, there are specific challenges for participants diagnosed with ADHD. For instance, the tendency to show irregularities in the day-and-night-rhythm might not always match the time of the smartphone prompts, that are sent in regular intervals. Furthermore, some patients tend to have problems in keeping their belongings organized. Especially for young patients, it might be challenging to keep the phone both charged and on their person. Inattention and lack of concentration as core symptoms of ADHD, are additional burdens to the conscientious and constant work on the questionnaires. Particularly young patients are expected to be quickly bored by the repeated questions, incoming day by day.

            We encounter those difficulties in multiple ways. An important tool is the smartphone’s chat function. Participants can easily reach a contact person and vice versa. Hence, individual or technical problems can be detected and solved quickly. In order to facilitate the start, we send reminding and motivating messages during the first four days of the measurement. To keep participants’ motivation high, they receive daily feedbacks, visualizing how they have performed when exercising.

            Taken as a whole, compliance, whether good or not, provides a lot of important information about the quality of the intervention. A treatment can only be considered as promising and helpful, when patients are able and motivated to include it into their daily lives. Therefore, the combination of ambulatory assessment and compliance monitoring gives us a realistic idea of a treatment’s actual feasibility and – in the consequence – it’s quality.

 

References:

[1] Trull, T. J., & Ebner-Priemer, U. W. (2013). Ambulatory Assessment. Annual review of clinical psychology, 9, 151–176. doi:10.1146/annurev-clinpsy-050212-185510 

[2] Piasecki et al. (2007). Assessing Clients in Their Natural Environments With Electronic Diaries: Rationale, Benefits, Limitations, and Barriers. Psychological Assessment,19(1), 25-43. doi:10.1037/1040-3590.19.1.25


[3] Carpenter, R. W., Wycoff, A. M., & Trull, T. J. (2016). Ambulatory assessment: New adventures in characterizing dynamic processes. Assessment, 23(4), 414–424. https://doi.org/10.1177/1073191116632341


 

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