Abstract
Objective:
To evaluate whether engagement and affective communication among adolescents and young adults (AYAs) with chronic kidney disease (CKD), caregivers, and pediatric nephrology providers during outpatient clinic visits predicts antihypertensive medication adherence.
Methods:
AYAs (n=60, M age=15.4 years, SD=2.7, 40% female, 43% African American/Black) and caregivers (n=60, 73% female) attended audio-recorded clinic visits with pediatric nephrologists (n=12, 75% female). Recordings were analyzed using global affect ratings of the Roter Interactional Analysis System. Antihypertensive medication adherence was monitored electronically before and after clinic visits. A linear regression model evaluated associations between affect ratings and post-visit adherence.
Results:
AYAs took 84% of doses (SD=20%) pre-visit and 82% of doses (SD=24%) post-visit. Higher AYA engagement (β=0.03, p=.01) and the absence of provider negative affect (β=−0.15, p=.04) were associated with higher post-visit adherence, controlling for pre-visit adherence, AYA sex, age, and race, and clustered by provider.
Conclusions:
Post-visit adherence was higher when AYAs were rated as more engaged and providers as less negative.
Practice Implications:
AYAs with lower engagement may benefit from further adherence assessment. Communication strategies designed to more actively engage AYAs in their care and diminish provider conveyance of negative affect during clinic visits may positively influence adherence among AYAs with CKD.
Keywords: Medication adherence, adolescent, physician-patient relations, communication, chronic kidney disease
1. Introduction
While some evidence suggests that effective communication in medical care is essential to promoting treatment adherence [1,2], less is known about how communication in patient-caregiver-provider outpatient encounters influences adherence. This is especially true for adolescents and young adults (AYAs) with chronic illnesses, who are at higher risk for nonadherence compared to younger children with chronic illnesses [3]. Among AYAs with chronic kidney disease (CKD), for example, approximately 60% do not regularly take their antihypertensive medications [4] despite the multiple health-related benefits these agents offer. The use of effective communication strategies to promote adherence to these renal-protective medications that lower blood pressure, decrease urinary protein excretion, and slow progression toward end stage renal disease [5–7] may foster positive health outcomes. The first step toward development of these approaches is to better characterize how AYA-caregiver-provider communication, including engagement and positive and negative affect, during outpatient clinic visits relates to antihypertensive medication adherence in AYAs with CKD.
The Social Action Theory [8] posits that an individual’s social context, including the interdependence of the people involved in an interaction, is a key component of promoting and maintaining health routines and habits, such as medication adherence. The social interaction processes (e.g., communication, engagement) that occur within these contexts, as well as affective states generated during a given interaction (e.g., displays of positive and negative verbal affect), play significant roles in activating mechanisms (e.g., motivation, problem solving, encoding of health information) that lead to behavioral change or sustained engagement in health behaviors [8]. Therefore, the level of engagement and valence of affective communication displayed by AYAs, caregivers, and pediatric nephrology providers during pediatric nephrology clinic visits may be related to AYAs’ antihypertensive medication adherence. These associations, however, have not been thoroughly investigated in AYAs, including among AYAs with CKD.
Consistent with the Social Action Theory, patient-caregiver-provider engagement (e.g., involvement and interactivity) is associated with adherence in pediatric patients with other chronic illnesses. For example, among children and AYAs with type 1 diabetes (T1D) [9] and asthma [10], as well as a sample of AYAs with a range of chronic illnesses [11], providers’ use of communication behaviors that enhance engagement of patients and caregivers (e.g., eliciting questions, soliciting illness management preferences, having supportive discussions about treatment during clinic visits) is associated with higher caregiver- and AYA-reported adherence. Similarly, when caregivers encourage AYAs to discuss their opinions about T1D management [12], caregiver- and AYA-reported adherence is higher. Thus, higher levels of engagement during clinical discussions, particularly from AYAs and caregivers, may be linked to higher antihypertensive medication adherence in AYAs with CKD.
The affective communication of AYAs, caregivers, and providers (e.g., negative affective tone suggesting anger or anxiety versus positive affective tone suggesting warmth or respect) may similarly contribute to AYA adherence. For example, among adolescents with T1D, providers’ use of confrontation (arguing, shaming, blaming) is associated with lower adherence 1 month later [13]. Adolescents with T1D have also described discussions about nonadherence with providers as eliciting negative feelings and embarrassment [14], which could lead to hesitancy to further discuss challenges due to concerns that providers will react negatively [15]. In contrast, among AYAs with cystic fibrosis [16,17], positive affective communication with care teams in which providers are perceived to listen to AYAs’ perspectives about adherence in a supportive manner is related to higher self-reported adherence. These findings suggest that positive, rather than negative, affective communication during clinic visits is associated with higher adherence and may even help AYAs engage more when discussing nonadherence. However, further research is needed to elucidate these associations in AYAs with CKD.
Previous research suggests that AYA, caregiver, and provider engagement and affective communication can influence adherence. However, prior studies have tended to be cross-sectional and rely on self-reported perceptions of clinic visits and medication adherence, which, unlike objective measures, may be subject to recall bias. Further, most studies have focused on provider communication without considering AYA and caregiver contributions to the social context. Lastly, with few exceptions [13], previous research has failed to account for adherence prior to clinic visits, which may influence communication during visits. Hence, to address these limitations and better inform communication-based strategies to improve AYA adherence, this study aimed to evaluate whether AYA, caregiver, and provider engagement and positive and negative affective communication during audio-recorded, independently-coded pediatric nephrology clinic visits were associated with AYAs’ electronically-monitored antihypertensive medication adherence after the visit. We hypothesized, based on the Social Action Theory [8], that higher AYA, caregiver, and provider engagement and positive affect and lower negative affect would be associated with higher post-visit adherence.
2. Methods
2.1. Participants
AYAs, caregivers, and pediatric nephrology providers were recruited from three separate pediatric nephrology clinics in the Mid-Atlantic United States as part of a larger, longitudinal, observational study of antihypertensive medication adherence in AYAs with CKD, which measured adherence, health outcomes, and psychosocial variables five times over 2 years [18]. The Institutional Review Board at each site (Johns Hopkins School of Medicine, University of Maryland Medical Center, Children’s National Health System) approved study procedures prior to recruitment. Inclusion criteria for AYAs included the following: a physician-confirmed diagnosis of CKD (stages 1-5), prescribed an antihypertensive medication for ≥6 months, and between 11 and 19 years old at time of consent. AYAs were excluded if they were unable to comprehend spoken English, unwilling to use electronic medication monitors, had a sibling already enrolled in the study, received a kidney transplant ≤6 months ago, or had developmental delays or cognitive impairment that would preclude completion of study procedures. All AYAs and caregivers provided written informed assent/consent.
Pediatric nephrology providers for enrolled AYAs at each site were invited to participate during site meetings held when the larger study began or via email invitation. Written informed consent was obtained from interested providers prior to AYAs’ audio-recorded clinic visits.
2.2.1. Procedures as Part of the Larger Study
As part of the larger study, AYAs’ daily antihypertensive medication adherence was electronically-monitored for 2 weeks every 6 months for 2 years (five adherence assessments total; see 2.3.2 Objective Antihypertensive Medication Adherence for more details). A 2-week adherence monitoring window was sufficient to obtain a valid objective assessment of adherence while minimizing AYA burden and supporting study retention. AYAs ≥18 years old and caregivers of AYAs <18 years old completed family demographic surveys during the baseline study visit. Medical information was abstracted from the electronic medical record, including hypertension or end-stage renal disease diagnoses, transplant status, and number of antihypertensive medications prescribed during each adherence monitoring period. Three clinic visits per AYA were audio-recorded (at baseline and approximately 12- and 24-month after baseline; see section 2.2.2 for details on which audio-recorded clinic visit was selected for use in this study). All AYAs were established patients at the respective clinics where audio-recorded clinic visits occurred. Prior to recording, written informed consent/assent were obtained from any family member, provider, or clinic staff member present but not yet enrolled in the study. Research staff started the recording and left the room, and participants were told that they could stop the recording at any time. Families received $50 for the audio-recorded clinic visits. Each time AYAs completed electronic adherence monitoring, families received $50 to $100 depending on the time point in the larger study. Providers did not receive compensation for their study participation.
2.2.2. Inclusion Criteria for the Current Study
For the current study, AYAs were included in the analyses if they had an audio-recorded clinic visit with (1) adherence data collected ≤7 months before the visit (2) adherence data collected no more than 7 months after the visit and (3) an enrolled caregiver present at the visit with the AYA. The +/− 7-month window was chosen to accommodate participant availability for study staff to complete the adherence monitoring. If an AYA had more than one clinic visit that met these inclusion criteria, the first audio-recorded clinic visit was selected for inclusion in the analysis (i.e., only one audio-recorded clinic visit was analyzed per AYA). Figure 1 provides more details on inclusion criteria for final analyses.
Figure 1.
Consort diagram reporting participant inclusion criteria for final analysis.
2.3. Measures
2.3.1. Roter Interaction Analysis System
Audiotaped clinic visits were coded with the Roter Interaction Analysis System (RIAS), a widely used method for coding patient-provider interactions [19]. The RIAS has high reliability and predictive validity for physician satisfaction, patient satisfaction, and other outcomes [20–22]. For this study, all audiotapes were coded by one coder who was experienced in using RIAS and who worked independently of the study team. Intra-coder reliability was assessed by having the coder re-code 24 recordings chosen at random throughout the coding period. Agreement in global ratings within 1 scale point ranged from 91% to 100%.
The current study used the RIAS’s global affect ratings assigned to AYAs, caregivers, and providers who were present during the visit. The ratings are considered global in nature since they are not attached to any specific communication behavior but characterize overall emotional tenor. The ratings were made on a 6-point scale, with higher scores indicating higher presence of each of the following emotions: anger, anxiety, interest, engagement, dominance, interactivity, warmth, sympathy, and respect. Depression and distress were also evaluated in AYAs and caregivers but not providers. Consistent with the RIAS rating conventions, a score of 3 or 4 represents an average rating for dominance, interest, warmth, engagement, sympathy, respect, and interactivity. A score of 1 is given if there are no displays of anger, anxiety, depression, or distress.
The individual affect ratings were combined to form three composite scales of engagement, positive affect, and negative affect. The engagement scale consisted of summed scores of dominance, interest, engagement, and interactivity (Cronbach’s alpha = 0.90 for caregivers, 0.90 for AYAs, 0.85 for providers) with a possible range of 4-24. The positive affect scale consisted of summed scores of warmth, sympathy, and respect (Cronbach’s alpha = 0.85 for caregivers, 0.91 for AYAs, and 0.84 for providers) with a possible range of 3-18. The negative affect scale included ratings of anger and anxiety for providers and anger, anxiety, depression, and distress for AYAs and caregivers. A binary score was used for the negative affect scale since there were low levels displayed in the sample, resulting in a non-normal distribution. If any one of the rated subscales had a rating >1, negative affect was considered “present” (coded as 1); if all subscale scores were 1, then negative affect was considered “absent” (coded as 0).
2.3.2. Objective Antihypertensive Medication Adherence
Antihypertensive medication adherence was assessed with the Medication Event Monitoring System (MEMS 6) with TrackCap monitors (AARDEX Ltd. Union City, CA). The MEMS cap records the dates and times when the AYA opens and closes their bottle. Medication regimens were verified via electronic medical record review and physician confirmation prior to placing medicine in the bottle. During a home study visit, a research assistant set up the MEMs cap; after 2-weeks, the research assistant returned to collect the MEMS cap. The adherence data were downloaded at the researchers’ secure facilities using MEMS software. AYAs who were prescribed >1 antihypertensive medications were given separate bottles with MEMS caps to monitor adherence to each medication. Adherence was calculated as the number of doses recorded as taken divided by the total number of expected openings based on the prescribed regimen and the number of days in the observation period; this value was reported as a percentage. For the AYAs who were prescribed more than one medication, adherence percentages were calculated separately for each medicine and then averaged across medications to obtain a composite adherence score.
2.3.3. Analytic Plan
Analyses were conducted with SPSS (Version 25 IBM, Armonk, NY) and STATA (Version 15 StataCorp, College Station, TX). Statistical significance was inferred when p<0.05. Descriptive statistics (mean, standard deviation, range) were obtained for primary study variables. Associations of AYA, caregiver, and provider engagement, positive affect, and negative affect during the audio-recorded clinic visit with AYA adherence captured <7 months after the audiotaped clinic visit (post-visit adherence) were examined in a single linear regression model that was clustered (adjusts standard errors) by provider (some individuals were providers for more than one enrolled AYA and may have appeared in more than one audio-recorded clinic visit; thus, observations could be correlated within providers but are independent between providers). The model also controlled for AYA age, sex, race, and adherence captured <7 months before the clinic visit (pre-visit adherence). Demographic covariates (AYA age, sex, race) were selected based on factors commonly associated with AYA adherence, including AYAs with CKD [3,18].
3. Results
3.1. Recruitment, Participant Characteristics, and Clinic Visit Characteristics
A total of 130 AYAs with CKD enrolled in the larger study, of which 2 were excluded due to screening failure (profound cognitive impairment). As reported previously [18], there were no significant differences in age, sex, or race between those who participated in the larger study and those who declined (N = 134).
In the current study, 60 AYAs were included in the final analyzed sample (see Figure 1). Not having an adherence assessment within the designated timeframe before and after the clinic visit was the biggest reason for participant exclusion from final analyses. There were no significant differences (i.e. age, sex, race, income, insurance type, hypertension status, end-stage renal disease status, transplant status) between AYAs in the final analyzed sample and AYAs enrolled in the larger study but excluded from analysis (N = 68). For the final AYA sample (AYA age at clinic visit M = 15.4 years, SD = 2.7, range = 11 to 21 years), the majority were male, took one antihypertensive medication per day, and had private health insurance. There were equal numbers of AYAs who identified as White or African American/Black. Caregivers were primarily female (n = 44, 73%) and the AYA’s biological mother (n = 43, 72%). Male caregivers (n = 16, 27%) were all AYAs’ biological fathers. Families were diverse in terms of reported annual income. See Table 1 for more details on sample demographics.
Table 1.
Demographic and Clinical Characteristics of 60 Adolescent and Young Adult Study Participants with Chronic Kidney Disease
| Characteristic | n | % |
|---|---|---|
| Sex | ||
| Female | 24 | 40 |
| Race/Ethnicity | ||
| White | 26 | 43 |
| African American/Black | 26 | 43 |
| Asian | 1 | 2 |
| Multiracial | 4 | 7 |
| Latinx | 2 | 3 |
| Other | 3 | 5 |
| Annual Household Income | ||
| <$50,000 | 19 | 32 |
| $50,000 - $100,000 | 20 | 33 |
| >$100,000 | 21 | 35 |
| Insurance Type | ||
| Public | 26 | 43 |
| Private | 27 | 45 |
| Both | 4 | 7 |
| Not reported | 3 | 5 |
| Solid Organ Transplant Recipient | ||
| Yes | 18 | 30 |
| End-Stage Renal Disease | ||
| Yes | 13 | 22 |
| Hypertension Diagnosis | ||
| Yes | 29 | 48 |
| Number of Antihypertensive Medications | ||
| One medication | 50 | 83 |
| 2+ medications | 10 | 17 |
There were 12 pediatric nephrology providers (100% physicians, 75% female, 50% Caucasian) who appeared in at least one of the 60 unique audio-recorded clinic visits analyzed (median = 3.5 visits; range = 1 to 10 visits). The median length of time between the pre-visit adherence assessment and clinic visit was 60 days (IQR = 71.5, range = 12 to 169 days). The median number length of time between the clinic visit and the post-visit adherence assessment was 119.6 days (IQR = 79.8, range = 0 to 202 days). Some AYAs had more than one clinic visit meeting inclusion criteria for final analysis; 73% (n = 44) of analyzed audio-recordings were from the baseline clinic visit, 18% (n = 11) were from the second clinic visit (12 months after the baseline), and 8% (n = 5) were from the third clinic visit (24 months after the baseline). Clinic visits lasted, on average, 31.8 minutes (SD = 14.8; range 11 to 90 minutes).
3.2. Descriptive Data on Primary Study Variables
Adherence was, on average, 84% (SD = 20%; range = 15% to 100%) during the pre-visit assessment and 82% (SD = 24%; range = 11% to 100%) during the post-visit assessment. Providers had the highest averages for positive affect and engagement, followed by caregivers and AYAs. Caregivers displayed negative affect in the highest number of clinic visits, followed by AYAs and providers. See Table 2 for detailed descriptive data for AYA, caregiver, and provider engagement, positive affect, and negative affect scores.
Table 2.
Descriptive Data for Engagement, Positive Affect, and Negative Affect among Adolescents and Young Adults (AYAs), Caregivers and Providers during Audiotaped Clinic Visits
| AYA (n = 60) | Caregiver (n = 60) | Provider (n = 12; 60 observations) | |||||||
|---|---|---|---|---|---|---|---|---|---|
| n (%) | M (SD) | Range | n (%) | M (SD) | Range | n (%) | M (SD) | Range | |
| Engagement (sum score) | -- | 13.05 (3.73) | 6-20 | -- | 17.77 (2.63) | 12-23 | -- | 18.05 (2.52) | 8-22 |
| Dominance | -- | 3.16 (1.10) | 1-6 | -- | 4.27 (.90) | 3-6 | -- | 4.16 (.88) | 1-6 |
| Interest | -- | 3.46 (1.06) | 2-6 | -- | 4.56 (.69) | 3-6 | -- | 4.65 (.77) | 2-6 |
| Engagement | -- | 3.19 (.97) | 1-6 | -- | 4.41 (.71) | 3-6 | -- | 4.24 (.67) | 3-6 |
| Interactivity | -- | 3.29 (1.07) | 1-5 | -- | 4.41 (.69) | 3-6 | -- | 4.57 (.64) | 2-6 |
| Positive Affect (sum score) | -- | 10.45 (2.61) | 7-18 | -- | 12.75 (1.94) | 10-18 | -- | 13.67 (1.78) | 8-18 |
| Warmth | -- | 3.41 (1.09) | 2-6 | -- | 4.38 (.85) | 3-6 | -- | 4.75 (.67) | 3-6 |
| Sympathy | -- | 2.98 (.94) | 2-6 | -- | 3.75 (.72) | 3-6 | -- | 2.84 (.52) | 2-6 |
| Respect | -- | 4.03 (.72) | 3-6 | -- | 4.60 (.56) | 3-6 | -- | 4.76 (.56) | 3-6 |
| Negative Affect (present/absent) | |||||||||
| Absence of Negative Affect | 35 (58.33) | -- | -- | 17 (28.33) | -- | -- | 47 (78.33) | -- | -- |
| Presence of Negative Affect | 25 (41.67) | -- | -- | 43 (71.67) | -- | -- | 13 (21.67) | -- | -- |
Note. Possible values for the RIAS subscales range from 1-6 with higher score indicating higher levels of the variable. Engagement and positive affect are total sum scores of the subscales that comprise these variables. Negative affect was scored as a binary variable indicating the presence or absence of anger and anxiety for providers and anger, anxiety, depression, and distress for AYAs and caregivers. Data are from 60 unique clinic visits.
3.3. Associations of AYA, Caregiver, and Provider Engagement and Positive and Negative Affect with Antihypertensive Medication Adherence
Results of the linear regression model (clustered by provider) appear in Table 3. Higher AYA engagement was significantly associated with higher post-visit adherence (β = .03, p = .01). The presence of provider negative affect was significantly associated with lower post-visit adherence (β = −.15, p = .04). There were no other significant associations between engagement or affective communication and post-visit adherence.
Table 3.
Associations of Adolescent and Young Adult (AYA), Caregiver, and Provider Engagement and Affective Communication during a Clinic Visit with Post-Visit Adherence
| Independent Variables | β | SE | p | 95% CI |
|---|---|---|---|---|
| AYA | ||||
| Sum Engagement Score | .03 | .01 | .01 | [.01 .05] |
| Sum Positive Affect Score | −.05 | .02 | .05 | [−.09 .00] |
| Presence of Negative Affect | .03 | .06 | .62 | [−.10 .16] |
| Caregiver | ||||
| Sum Engagement Score | .03 | .02 | .16 | [−.02 .08] |
| Sum Positive Affect Score | −.04 | .22 | .14 | [−.08 .01] |
| Presence of Negative Affect | −.03 | .04 | .53 | [−.12 .07] |
| Provider | ||||
| Sum Engagement Score | .00 | .02 | .82 | [−.05 .04] |
| Sum Positive Affect Score | −.01 | .02 | .44 | [−.06 .03] |
| Presence of Negative Affect | −.15 | .06 | .04 | [−.29 −.01] |
| R2 = 0.62 | ||||
| N = 60 unique clinic visits | ||||
Note. Models are adjusted for AYA pre-visit adherence, sex, age, and race and are clustered by provider.
4. Discussion and Conclusion
4.1. Discussion
Although AYA, caregiver, and provider communication are key to promoting medication adherence [1,2,9,10], there has been little empirical study of this association using objective assessments of communication and adherence. To our knowledge, this study is the first to rigorously evaluate if communication factors consistent with the Social Action Theory, including AYA, caregiver, and provider engagement and positive and negative affective communication, are associated with electronically-monitored antihypertensive adherence in AYAs with CKD. Our study advances prior, primarily cross-sectional research by demonstrating that independently-coded higher levels of AYA engagement and the absence of provider negative affect are associated with higher AYA adherence after their pediatric nephrology clinic visit, even when accounting for pre-visit adherence. Our findings suggest that using strategies to encourage AYA participation in clinic visits and reduce provider displays of negative affect may increase adherence and, potentially, improve long-term health outcomes for AYAs with CKD.
As expected, higher AYA engagement during clinic visits was associated with higher adherence at the post-visit assessment. Our results, using more rigorous methods, are consistent with prior pediatric findings [9,11,23,24] and with literature on patient activation (patients’ understanding of their role in medical care management and willingness to carry out that role), which shows that individuals who are actively engaged in their care are more adherent [25]. The Social Action Theory [8] posits that higher engagement during clinic visits leads to enhanced motivation to implement actual changes in health behaviors, including increasing medication adherence. When AYAs participate in pediatric nephrology clinic visits, they may develop a greater internal motivation to consistently take their antihypertensive medications. Prior research shows that pediatric nephrology providers inconsistently ask for AYA perspectives during clinic visits [26], which could impede opportunities for AYA engagement. Providers should use communication techniques, such as asking open-ended and evocative questions followed by providing time for AYAs to fully respond, using simple reflections, showing empathy to convey understanding of AYAs’ perspectives, and involving AYAs in illness management and goal setting discussions [9,14,27,28] to activate AYA engagement and potentially improve adherence. Empirical studies are needed to better quantify the extent to which these communication approaches improve engagement and adherence in AYAs with CKD.
Our results suggest that provider conveyance of negative affect during clinic visits is associated with lower post-visit adherence. Our findings in AYAs with CKD add to results from the T1D literature showing that providers’ use of communication suggesting negative affect (e.g., arguing, shaming, blaming, criticizing) during clinic visits is related to lower AYA adherence and worse disease management [13]. Consistent with the Social Action Theory [8], affective communication during social interactions could influence self-change processes (e.g., motivation, encoding of health information) that impact AYAs’ likelihood of performing health behaviors, such as adhering to medication. Provider negative affect may detrimentally impact these self-change processes and adversely affect adherence. Of note, provider negative affect levels were relatively low in our sample, which likely reflects social norms and expectations of providers’ roles, but also suggests that even minimal negative affect from providers may adversely influence AYA adherence. If providers avoid displays of negative affect throughout the visit (e.g., adopt neutral and non-judgement tones instead of expressing frustration or disappointment), AYAs may discuss adherence challenges more openly. In turn, providers may have opportunities to intervene upon adherence barriers, support AYA self-efficacy and motivation, and ultimately improve adherence. This hypothesized mechanistic association requires testing via further empirical study.
Unexpectedly, AYA positive and negative affect, caregiver engagement and positive and negative affect, and provider engagement and positive affect were not significantly associated with post-visit adherence. This may be due to methodological differences (e.g., neutral observer coded clinic visits, use of electronic adherence monitoring) between our study and previous investigations [12,16,17]. Our smaller sample size likely limited statistical power to detect significant effects. Additionally, AYA and caregiver negative affect reflected depression, distress, anxiety, and anger, while provider negative affect only encompassed anger and anxiety. Hence, AYA and caregiver negative affect may have reflected sadness and concerns about the AYA’s illness (outside of adherence) or other areas of functioning (e.g., school, social life) and may not necessarily relate to adherence. Further research is needed in larger samples of AYAs with CKD using similarly rigorous methodology to clarify the nature of these associations.
This study had some limitations. Global affect ratings are useful indicators of communication [19], but ratings were limited to audio recordings and do not include eye gaze, head nods, smiles and other body language markers of emotion. Due to the scale’s global nature, the context of communication (e.g., whether emotion is expressed when discussing adherence or non-medical matters) and to whom statements are directed are not incorporated into the score. Further, we were unable to examine potential bidirectional associations between global affect ratings (e.g., AYA engagement and provider affect), which may be an avenue for future research. We measured adherence in two timeframes rather than continuously; events occurring between adherence measurements and clinic visits could have influenced adherence. We measured communication at one clinic visit, but the AYA-caregiver-provider relationship was already established. Therefore, we cannot remark on how prior interactions impacted observed communication or pre- or post-visit adherence. Participants were recruited from three separate sites, but the sites were in the same geographical region with 12 providers represented, which may limit generalizability of the results. Despite these limitations, our study reflects advanced scientific rigor compared to prior studies, provides important findings with clear clinical implications, and suggests many avenues for future investigations and interventions to improve AYA adherence and health outcomes.
4.2. Conclusion
Higher AYA engagement and the absence of provider negative affect during pediatric nephrology clinic visits are associated with higher post-visit adherence, even after controlling for pre-visit adherence, in AYAs with CKD. When AYAs with CKD become more involved in talking to their providers and when pediatric nephrologists do not display negative affect during clinic visits, AYAs may have higher adherence after the visit. There were no significant associations between caregiver engagement or affective communication and AYA adherence in this study, but this may be due to the smaller sample size. AYA engagement and provider negative affect may be targets of communication-based interventions to modify the social milieu of clinic visits to potentially enhance AYA adherence.
4.3. Practice Implications
Our findings suggest that AYAs who display lower engagement during pediatric nephrology clinic visits are at greater risk of nonadherence. These AYAs may benefit from further assessment to identify and resolve challenges with adherence. Provider-based strategies to elicit more AYA participation in clinic visits (e.g., ask open-ended questions, pause for full responses, demonstrate understanding of AYA perspectives, include AYAs in disease management discussions) may enhance adherence, though these strategies’ efficacy should be confirmed via intervention outcome studies. Providers should be aware of the adverse effect that negative affect may have on AYA adherence and how limiting such displays could foster an environment that optimizes adherence and health outcomes for AYAs with CKD.
Highlights.
Effective communication in medical care could promote adherence for AYAs with CKD.
Higher AYA engagement in pediatric nephrology visits relates to higher adherence.
Provider negative affect in these visits relates to lower AYA adherence.
Good communication may increase AYA engagement and reduce provider negative affect.
Acknowledgments
Funding: This work was supported by the National Institute of Diabetes and Digestive and Kidney Diseases, National Institutes of Health (R01DK092919, awarded to Kristin A. Riekert, PhD).
Footnotes
Publisher's Disclaimer: This is a PDF file of an unedited manuscript that has been accepted for publication. As a service to our customers we are providing this early version of the manuscript. The manuscript will undergo copyediting, typesetting, and review of the resulting proof before it is published in its final form. Please note that during the production process errors may be discovered which could affect the content, and all legal disclaimers that apply to the journal pertain.
Declaration of interests
None.
References
- [1].Haskard Zolnierek KB, DiMatteo MR, Physician Communication and Patient Adherence to Treatment: A Meta-analysis, Med. Care 47 (2009) 826–34. 10.1097/MLR.0b013e31819a5acc. [DOI] [PMC free article] [PubMed] [Google Scholar]
- [2].Riedl D, Schüßler G, The Influence of Doctor-Patient Communication on Health Outcomes: A Systematic Review, Z. Für Psychosom. Med. Psychother. 63 (2017) 131–50. 10.13109/zptm.2017.63.2.131. [DOI] [PubMed] [Google Scholar]
- [3].Hommel KA et al. , “Adherence to Pediatric Treatment Regimens”, in: Roberts MC and Steele RG, Handbook of Pediatric Psychology, Fifth Edition. Guilford Publications, New York, 2018. [Google Scholar]
- [4].Pruette CS, Cobum SS, Eaton CK, Brady TM, Tuchman S, Mendley S, Fivush BA, Eakin MN, Riekert KA, Does a multimethod approach improve identification of medication nonadherence in adolescents with chronic kidney disease?, Pediatr. Nephrol. Berk Ger. 34 (2019) 97–105. 10.1007/s00467-018-4044-x. [DOI] [PMC free article] [PubMed] [Google Scholar]
- [5].Wühl E, Mehls O, Schaefer F, ESCAPE Trial Group, Antihypertensive and antiproteinuric efficacy of ramipril in children with chronic renal failure, Kidney Int. 66 (2004) 768–76. 10.1111/j.1523-1755.2004.00802.x. [DOI] [PubMed] [Google Scholar]
- [6].Warady BA, Abraham AG, Schwartz GJ, Wong CS, Muñoz A, Betoko A, Mitsnefes M, Kaskel F, Greenbaum LA, Mak RH, Flynn J, Moxey-Mims MM, Furth S, Predictors of Rapid Progression of Glomerular and Nonglomerular Kidney Disease in Children and Adolescents: The Chronic Kidney Disease in Children (CKiD) Cohort, Am. J. Kidney Dis. Off. J. Natl. Kidney Found. 65 (2015) 878–88. 10.1053/j.ajkd.2015.01.008. [DOI] [PMC free article] [PubMed] [Google Scholar]
- [7].Coresh J, Turin TC, Matsushita K, Sang Y, Ballew SH, Appel LJ, Arima H, Chadban SJ, Cirillo M, Djurdjev O, Green JA, Heine GH, Inker LA, Irie F, Ishani A, Ix JH, Kovesdy CP, Marks A, Ohkubo T, Shalev V, Shankar A, Wen CP, de Jong PE, Iseki K, Stengel B, Gansevoort RT, Levey AS, Decline in estimated glomerular filtration rate and subsequent risk of end-stage renal disease and mortality, JAMA. 311 (2014) 2518–31. 10.1001/jama.2014.6634. [DOI] [PMC free article] [PubMed] [Google Scholar]
- [8].Ewart CK, Social action theory for a public health psychology, Am. Psychol. 46 (1991) 931–46. 10.1037/0003-066X.46.9.931. [DOI] [PubMed] [Google Scholar]
- [9].Croom A, Wiebe DJ, Berg CA, Lindsay R, Donaldson D, Foster C, Murray M, Swinyard MT, Adolescent and Parent Perceptions of Patient-Centered Communication while Managing Type 1 Diabetes, J. Pediatr. Psychol. 36 (2011) 206–15. 10.1093/jpepsy/jsq072. [DOI] [PMC free article] [PubMed] [Google Scholar]
- [10].Sleath B, Carpenter DM, Slota C, Williams D, Tudor G, Yeatts K, Davis S, Ayala GX, Communication During Pediatric Asthma Visits and Self-Reported Asthma Medication Adherence, Pediatrics. 130 (2012) 627–33. 10.1542/peds.2012-0913. [DOI] [PMC free article] [PubMed] [Google Scholar]
- [11].Plevinsky JM, Greenley RN, Bugno L, Carreon S, Igler EC, Davies WH, Development and preliminary validation of a patient-reported measure of patient-provider communication about medication prescriptions for adolescents and young adults, Child. Health Care. 48 (2019) 263–84. 10.1080/02739615.2018.1531757. [DOI] [Google Scholar]
- [12].Miller VA, Jawad AF, Relationship of Youth Involvement in Diabetes-Related Decisions to Treatment Adherence, J. Clin. Psychol. Med. Settings. 21 (2014) 183–9. 10.1007/s10880-014-9388-1. [DOI] [PMC free article] [PubMed] [Google Scholar]
- [13].Caccavale LJ, Corona R, LaRose JG, Mazzeo SE, Sova AR, Bean MK, Exploring the role of motivational interviewing in adolescent patient-provider communication about type 1 diabetes, Pediatr. Diabetes. 20 (2019)217–25. 10.1111/pedi.12810. [DOI] [PMC free article] [PubMed] [Google Scholar]
- [14].Amirniroumand R, Valenzuela JM, Smith LB, Nicholl MC, Dolan LM, Powers SW, Adolescent and caregiver perspectives on provider-patient interactions in Type 2 diabetes., Clin. Pract. Pediatr. Psychol 5 (2017) 404–14. 10.1037/cpp0000213. [DOI] [Google Scholar]
- [15].Drotar D, Physician Behavior in the Care of Pediatric Chronic Illness: Association With Health Outcomes and Treatment Adherence, J. Dev. Behav. Pediatr 30 (2009) 246–54. 10.1097/DBP.0b013e3181a7ed42. [DOI] [PubMed] [Google Scholar]
- [16].Sawicki GS, Heller KS, Demars N, Robinson WM, Motivating Adherence Among Adolescents With Cystic Fibrosis: Youth and Parent Perspectives, Pediatr. Pulmonol 50 (2015) 127–36. 10.1002/ppul.23017. [DOI] [PMC free article] [PubMed] [Google Scholar]
- [17].George M, Rand-Giovannetti D, Eakin MN, Borrelli B, Zettler M, Riekert KA, Perceptions of barriers and facilitators: Self-Management Decisions by Older Adolescents and Adults with CF, J. Cyst. Fibros. Off. J. Eur. Cyst. Fibros. Soc 9 (2010) 425–32. 10.1016/j.jcf.2010.08.016. [DOI] [PMC free article] [PubMed] [Google Scholar]
- [18].Eaton CK, Eakin MN, Cobum S, Pruette CS, Brady TM, Fivush BA, Mendley S, Tuchman S, Riekert KA, Patient Health Beliefs and Characteristics Predict Longitudinal Antihypertensive Medication Adherence in Adolescents With CKD, J. Pediatr. Psychol 44 (2019) 40–51. 10.1093/jpepsy/jsy073. [DOI] [PMC free article] [PubMed] [Google Scholar]
- [19].Roter D, Larson S, The Roter interaction analysis system (RIAS): utility and flexibility for analysis of medical interactions, Patient Educ. Couns. 46 (2002) 243–51. 10.1016/s0738-3991(02)00012-5. [DOI] [PubMed] [Google Scholar]
- [20].Roter DL, Stewart M, Putnam SM, Lipkin M, Stiles W, Inui TS, Communication Patterns of Primary Care Physicians, JAMA. 277 (1997)350–6. 10.1001/jama.1997.03540280088045. [DOI] [PubMed] [Google Scholar]
- [21].Castillo EG, Pincus HA, Wieland M, Roter D, Larson S, Houck P, Reynolds CF, Cruz M, Communication Profiles of Psychiatric Residents and Attending Physicians in Medication-Management Appointments: A Quantitative Pilot Study, Acad. Psychiatry J. Am. Assoc. Dir. Psychiatr. Resid. Train. Assoc. Acad. Psychiatry. 36 (2012) 96–103. 10.1176/appi.ap.10120030. [DOI] [PMC free article] [PubMed] [Google Scholar]
- [22].Beach MC, Roter DL, Saha S, Korthuis PT, Eggly S, Cohn J, Sharp V, Moore RD, Wilson IB, Impact of a brief patient and provider intervention to improve the quality of communication about medication adherence among HIV patients, Patient Educ. Couns 98 (2015) 1078–83. 10.1016/j.pec.2015.05.011. [DOI] [PMC free article] [PubMed] [Google Scholar]
- [23].Arbuthnott A, Sharpe D, The effect of physician-patient collaboration on patient adherence in non-psychiatric medicine, Patient Educ. Couns. 77 (2009) 60–7. 10.1016/j.pec.2009.03.022. [DOI] [PubMed] [Google Scholar]
- [24].Miller VA, Involving Youth With a Chronic Illness in Decision-making: Highlighting the Role of Providers, Pediatrics. 142 (2018) S142–8. 10.1542/peds.2018-0516D. [DOI] [PMC free article] [PubMed] [Google Scholar]
- [25].Hibbard JH, Greene J, What The Evidence Shows About Patient Activation: Better Health Outcomes And Care Experiences; Fewer Data On Costs, Health Aff. (Millwood). 32 (2013) 207–14. 10.1377/hlthaff.2012.1061. [DOI] [PubMed] [Google Scholar]
- [26].Coburn SS, Callon WA, Eakin MN, Pruette CS, Brady TM, Mendley SR, Tuchman S, Fivush BA, Riekert KA, Evaluating provider communication in pediatric chronic kidney disease care using a global coding system, Patient Educ. Couns (2020). 10.1016/j.pec.2020.02.014. [DOI] [PMC free article] [PubMed] [Google Scholar]
- [27].Sleath B, Ayala GX, Washington D, Davis S, Williams D, Tudor G, Yeatts K, Gillette C, Caregiver rating of provider participatory decision-making style and caregiver and child satisfaction with pediatric asthma visits, Patient Educ. Couns. 85 (2011) 286–9. 10.1016/j.pec.2010.09.016. [DOI] [PMC free article] [PubMed] [Google Scholar]
- [28].Hashim MJ, Patient-Centered Communication: Basic Skills, Am. Fam. Physician. 95 (2017) 29–34. [PubMed] [Google Scholar]