a result of enforced non-adherence via PA rather than individual factors .
The purpose of this study was , therefore , to explore families ’ experiences with the PA process related to their child ’ s psychotropic medication . The results were notable in several areas , including length and recurrence of delays , medications involved , and reported impact on the child and family .
When respondents reported problems , they often reported problems on multiple occasions with the PA process ( mean = 4.5 occasions ), suggesting that some families bear a greater burden in the process . In approximately 30 % of reported instances in which delays occurred , respondents reported delays of greater than one week for medication . Many families reported problems with the child ’ s mood and / or behavior during the delay . These behaviors are usually target symptoms for these medications . However , several respondents independently reported farther-reaching consequences . One respondent reported that their child was expelled from school due to several consecutive behavioral events at school when they were without their medication . This child ’ s only remaining option for education was home schooling . Another respondent withheld their child from school during the delay out of fear of a similar outcome .
This data provides an initial window into the challenges faced by families in navigating the PA process . Many caregivers described serious financial implications resulting from challenges with the PA process . Two respondents reported paying $ 300 out of pocket for their medicine due to concerns about delays in receiving their medication . One respondent reported that their town ’ s pharmacy would not be reimbursed , requiring them to drive to another town for medication access . In the rural Appalachian population of this sample , this distance can be significant and directly contribute to further financial , employment , and educational burdens . Implications about change in educational placement , potential adverse consequences to caregiver employment , and financial burden have the potential to impact child and family functioning well beyond the time of the medication delay .
The types of medication impacted were also noteworthy . It was initially expected based on provider experience that the problems reported would be primarily with antipsychotic medication , particularly newer , second generation or atypical antipsychotic , medications . While antipsychotic medication access was impacted by the PA process , this study showed a surprising variety of medications represented . Of particular interest was the overwhelming report of problems with PA for stimulants , suggesting the potential for a broader scope of impact as these medications are prescribed more frequently for more prevalent clinical indications . This could result in a wider range of families affected by the PA process .
While the results demonstrate the potential for delayed medication access and other adverse experiences in PA programs , there are several limitations and suggestions for future studies . This study is limited by a small sample size , and we are not able to speak to the prevalence of problems with PA across the entire patient population . The results are also limited by recall bias , as families may remember their PA experiences incorrectly . As data was not collected on response rates , there is also the potential for bias in responding , as respondents may be more motivated to complete a survey if their family was more significantly impacted by the PA process . Therefore , we are unable to determine whether the amount of disruption reported by families in this study is representative of typical family experience . Finally , we were unable to statistically examine the relationships between variables , although this is a planned topic of future study . However , despite the limitations of this study , it is the first known study to survey the impact on family functioning due to PA programs . If the scope and frequency of the problems reported in this sample are representative of the larger population , there may be significant downstream costs for families and for society in the form of significant impact on children ’ s emotional well-being , financial burden and impact on parent employment , and school placement changes . Results strongly suggest a need for more research to assess the scope of adverse consequences on clinical , family , and financial outcomes .
CONCLUSION
Although these results are preliminary , the impact of the PA process on these families would suggest that the people and systems involved should work to limit the impact of PA delays on patients . For example , providers should be aware of their own state ’ s requirements and prepare or streamline practice procedures for managing PA . Families can be provided with information about the potential for PA delays and a plan for managing any delays can be developed . Pharmacies can develop policies to provide medication coverage during the PA process . Providers and advocacy groups are already actively working toward changes in the PA process , and this pilot study provides support for change at the policy level regarding the cost savings for payors at the expense of costs for patients and families .
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