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Development of an inventory to assess perceived barriers related to PKU treatment.

ABSTRACT: BACKGROUND:According to studies of phenylketonuria (PKU), the Brazilian population's metabolic control shows unsatisfactory indexes from childhood. Research on patients' perceived difficulties or barriers to adherence to treatment can help us to comprehend how these outcomes are associated. The present study aimed to: (1) describe the development of an inventory for identifying the most frequent and relevant perceived barriers to PKU treatment from the perspective of patients, caregivers, and healthcare professionals; (2) evaluate certain psychometric characteristics of the new measure; and, (3) explore potential predictors (sociodemographic and medical characteristics) that may contribute to increasing the number of perceived barriers and examine whether the number of barriers is associated with the degree of adherence shown by the patient. RESULTS:Participants in the study were 23 patients with PKU (M age?=?18.0?years; SD?=?7.3; range 6 to 34?years; 69% early-treated) in classical (n?=?11) and mild (n?=?12) form, and 11 caregivers. The inventory, developed to ascertain perceived barriers to treatment, was completed by patients (? 13?years) and caregivers of patients aged 6 to 17?years. Analyses were conducted to investigate whether barrier inventory scores were associated with adherence to treatment as measured by phenylalanine levels in patients' medical records. Scores on the inventory differed across the patient age groups: adolescents had lower scores (i.e. reported fewer barriers) compared with those of adults (U?=?8.000, p?=?0.008); patients with better recent metabolic control also reported fewer perceived barriers than did patients with poor adherence (U?=?20.000, p?=?0.009); and the number of perceived barriers was positively associated with recent blood phenylalanine concentration (Kendall's taub?=?0.41; p?=?0.001). CONCLUSIONS:These results suggest that the inventory has merit in assessing perceived barriers and support the need for further research on barriers perceived by PKU patients.

SUBMITTER: Teruya KI

PROVIDER: S-EPMC7195505 | biostudies-literature | 2020 May

REPOSITORIES: biostudies-literature

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Development of an inventory to assess perceived barriers related to PKU treatment.

Teruya Katia Irie KI Remor Eduardo E Schwartz Ida Vanessa Doederlein IVD

Journal of patient-reported outcomes 20200501 1

<h4>Background</h4>According to studies of phenylketonuria (PKU), the Brazilian population's metabolic control shows unsatisfactory indexes from childhood. Research on patients' perceived difficulties or barriers to adherence to treatment can help us to comprehend how these outcomes are associated. The present study aimed to: (1) describe the development of an inventory for identifying the most frequent and relevant perceived barriers to PKU treatment from the perspective of patients, caregivers ...[more]

PMID: 32358708

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Project description:INTRODUCTION:Access to high-quality healthcare, including mental healthcare, is a high priority for the Department of Veterans Affairs (VA). Meaningful monitoring of progress will require patient-centered measures of access. To that end, we developed the Perceived Access Inventory focused on access to VA mental health services (PAI-VA). However, VA is purchasing increasing amounts of mental health services from community mental health providers. In this paper, we describe the development of a PAI for users of VA-funded community mental healthcare that incorporates access barriers unique to community care service use and compares the barriers most frequently reported by veterans using community mental health services to those most frequently reported by veterans using VA mental health services. MATERIALS AND METHODS:We conducted mixed qualitative and quantitative interviews with 25 veterans who had experience using community mental health services through the Veterans Choice Program (VCP). We used opt-out invitation letters to recruit veterans from three geographic regions. Data were collected on sociodemographics, rurality, symptom severity, and service satisfaction. Participants also completed two measures of perceived barriers to mental healthcare: the PAI-VA adapted to focus on access to mental healthcare in the community and Hoge's 13-item measure. This study was reviewed and approved by the VA Central Institutional Review Board. RESULTS:Analysis of qualitative interview data identified four topics that were not addressed in the PAI-VA: veterans being billed directly by a VCP mental health provider, lack of care coordination and communication between VCP and VA mental health providers, veterans needing to travel to a VA facility to have VCP provider prescriptions filled, and delays in VCP re-authorization. To develop a PAI for community-care users, we created items corresponding to each of the four community-care-specific topics and added them to the 43-item PAI-VA. When we compared the 10 most frequently endorsed barriers to mental healthcare in this study sample to the ten most frequently endorsed by a separate sample of current VA mental healthcare users, six items were common to both groups. The four items unique to community-care were: long waits for the first mental health appointment, lack of awareness of available mental health services, short appointments, and providers' lack of knowledge of military culture. CONCLUSIONS:Four new barriers specific to veteran access to community mental healthcare were identified. These barriers, which were largely administrative rather than arising from the clinical encounter itself, were included in the PAI for community care. Study strengths include capturing access barriers from the veteran experience across three geographic regions. Weaknesses include the relatively small number of participants and data collection from an early stage of Veteran Choice Program implementation. As VA expands its coverage of community-based mental healthcare, being able to assess the success of the initiative from the perspective of program users becomes increasingly important. The 47-item PAI for community care offers a useful tool to identify barriers experienced by veterans in accessing mental healthcare in the community, overall and in specific settings, as well as to track the impact of interventions to improve access to mental healthcare.

Dataset Information

Development of an inventory to assess perceived barriers related to PKU treatment.

Publications

Development of an inventory to assess perceived barriers related to PKU treatment.

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