Community engagement in health status instrument development: experience with the HIV disability questionnaire.

BACKGROUND: People with HIV face a variety of health-related challenges from HIV, concurrent health conditions, and side effects of treatment. These health-related challenges may be termed disability. Community involvement in conceptualizing and understanding disability is essential to developing appropriate measurement tools. OBJECTIVE: To describe a community-academic partnership in the development of a new self-administered health status instrument, the HIV Disability Questionnaire (HDQ), using a community-engaged approach. METHODS: With a Community Advisory Committee, we used categories from the Episodic Disability Framework, a conceptual framework developed in an earlier stage of research, as a foundation for item generation. RESULTS: The purpose of the 70-item HDQ is to characterize the presence, severity, and episodic nature of disability experienced by adults with HIV. The Community Advisory Committee suggested items beyond those in the Episodic Disability Framework, refined item phrasing, order, response options, and questionnaire instructions to enhance feasibility and relevance of the HDQ to adults with HIV, advised on how to structure the questionnaire to capture the episodic nature of disability, and suggested next steps for testing and implementation. CONCLUSIONS: The HDQ is the first HIV-specific questionnaire to describe disability experienced by adults with HIV. Engaging community research partners in the development of the HDQ enhanced the questionnaire's relevance, feasibility, and face and content validities. This approach may be considered by others interested in health status instrument development.

Sensibility assessment of the HIV Disability Questionnaire.

PURPOSE: Our purpose was to assess the sensibility of the human immunodeficiency virus (HIV) Disability Questionnaire (HDQ), the first HIV-specific disability questionnaire. METHODS: We administered the HDQ, a sensibility questionnaire and a structured qualitative interview to 22 adults living with HIV and five experienced clinicians. We considered the HDQ sensible if median scores on the sensibility questionnaire were ≥5 for adults living with HIV and ≥4 for clinicians for at least 80% of the items. We analyzed the interview data using directed qualitative content analytical techniques. RESULTS: Questionnaire scores were ≥5 for 88% (15/17) of the items and ≥4 for 100% (17/17) of the items for adults living with HIV and clinicians, respectively. The interview analysis indicated participants felt the HDQ possessed face and content validity in all disability dimensions, had adequate response options, was easy to complete, and adequately captured the episodic nature of disability. Participants had mixed responses about the questionnaire title and provided recommendations to refine item wording and response options. CONCLUSIONS: The HDQ appears sensible for use with adults living with HIV. Next steps include further measurement property assessment. The HDQ may be used by rehabilitation clinicians and researchers to assess disability experienced by adults living with HIV. IMPLICATIONS FOR REHABILITATION: • As people with HIV infection live longer, individuals may face a range of health-related challenges due to the disease, concurrent health conditions and the potential adverse effects of treatment. Together, these health-related challenges may be termed disability. • The HIV Disability Questionnaire (HDQ) is the first HIV-specific instrument developed to describe the presence, severity and episodic nature of the disability experienced by adults living with HIV. The HDQ is comprised of four domains including symptoms and impairments, uncertainty about future health, difficulties carrying out day-to-day activities, and challenges to social inclusion. • The HDQ appears sensible for use with adults living with HIV, possessing face and content validity and ease of use in all four domains as well as describing the daily episodic nature of disability. • The HDQ may be used by rehabilitation clinicians and researchers to assess disability experienced by adults living with HIV.

Oral health outcomes in an adult dental population: the impact of payment systems.

This study compared the effect of payment systems on recall visits and oral health outcomes for four patient payer groups. The authors reviewed recall audit data obtained over a 4-year period. Dental payer groups in the study population differed with respect to dental outcomes. Patients who had recall visits at 1 year or longer had worse outcomes than patients seen more frequently. A Medicaid subgroup with the greatest number of risk factors displayed improved oral health outcomes when seen on a more frequent recall schedule. Study findings suggest that, given the increased risks to maintaining oral health, patients being supported by public-funded programs would benefit from more frequent recalls. Such an emphasis would appear to provide the opportunity to improve outcomes in disadvantaged populations and increase the quality of care offered.

Toward solving the sedation-assessment conundrum: bi-spectral index monitoring and sedation interruption.

The sedation-assessment conundrum is defined by two diametrically opposed goals: to maintain an appropriate level of sedation, and to obtain a comprehensive neurologic examination that most accurately reflects the patient's neurologic status. A case presentation leads to a discussion of over-sedation and under-sedation issues that impact the care of critically ill patients. This information is useful in understanding the many methods of assessing sedation and interpreting individualized patient responses to sedation. The use of bi-spectral index monitoring and periods of sedation interruption are discussed within the context of addressing the sedation-assessment conundrum.