Biomedical subjects

Sandra R Wilson

Publications and source records attributed to Sandra R Wilson.

7 recordsLinked to original sources

PubMed2005

Patients' perspectives on how idiopathic pulmonary fibrosis affects the quality of their lives.

BACKGROUND: Idiopathic pulmonary fibrosis (IPF) is a debilitating lung disease with a survival of only three to five years from the time of diagnosis. Due to a paucity of studies, large gaps remain in our understanding of how IPF affects the quality of patients' lives. In only one other study did investigators ask patients directly for their perspectives on this topic. Further, currently there is no disease-specific instrument to measure health-related quality of life (HRQL) in patients with IPF. A carefully constructed measurement instrument, sensitive to underlying change, is needed for use in clinical trials and longitudinal studies of patients with IPF. Before developing such an instrument, researchers must improve their understanding of the relevant effects of IPF on patients' lives. On a broader scale, to provide the best care for people with IPF, clinicians must appreciate--from patients' perspectives--how this disease affects various aspects of their lives. METHODS: We used focus groups and individual in-depth interviews with 20 IPF patients to collect their perspectives on how IPF affects their lives (with a focus on the quality of their lives). We then analyzed these perspectives and organized them into a conceptual framework for describing HRQL in patients with IPF. Next, we examined how well certain existing measurement instruments--which have been administered to IPF patients in prior studies--covered the domains and topics our patients identified. RESULTS: In our framework, we identified 12 primary domains: symptoms, IPF therapy, sleep, exhaustion, forethought, employment and finances, dependence, family, sexual relations, social participation, mental and spiritual well-being, mortality. Each domain is composed of several topics, which describe how IPF affects patients' lives. When we compared the content of our conceptual framework with the existing instruments, we found the coverage of the existing instruments to be inadequate for several reasons, including they may tap general areas of QOL or HRQL but not some areas that appear to be most directly affected by IPF, and they include items that are relevant to symptoms and effects of other respiratory diseases but not IPF. CONCLUSION: Collecting patients' perspectives and developing an organized inventory of the relevant effects of IPF on patients' lives provides valuable information for improving our understanding of the impact of this disease on patients and their loved ones. We believe our findings will help alert clinicians and researchers to IPF patients' experiences and concerns. Based on the comparison or our conceptual framework with the content of four existing instruments, it would appear that developing an IPF-specific measurement instrument is justified. Our conceptual framework for describing health-related quality of life in patients with IPF lays a solid foundation for constructing such an instrument.

Adult↗

PubMed2005

A home visiting asthma education program: challenges to program implementation.

This study describes the implementation of a nurse home visiting asthma education program for low-income African American families of young children with asthma. Of 55 families, 71% completed the program consisting of eight lessons. The achievement of learning objectives was predicted by caregiver factors, such as education, presence of father or surrogate father in the household, and safety of the neighborhood, but not by child factors, such as age or severity of asthma as implied by the prescribed asthma medication regimen. Incompatibility between the scheduling needs of the families and the nurse home visitors was a major obstacle in delivering the program on time, despite the flexibility of the nurse home visitors. The authors suggest that future home-based asthma education programs contain a more limited number of home visits but add telephone follow-ups and address the broader needs of low-income families that most likely function as barriers to program success.

Adolescent↗

PubMed2005

Health-related quality of life among patients with idiopathic pulmonary fibrosis.

The hallmark of idiopathic pulmonary fibrosis (IPF) is relentless and progressive breathlessness culminating in respiratory failure and death. Clinicians and investigators are increasingly aware that many patients with chronic diseases, like IPF, value the quality of their lives as much or more than their length of survival. Despite this growing awareness, little research has focused on quality of life (QOL) in IPF patients. Nevertheless, the few studies that have been performed uniformly show the negative impacts of IPF on QOL, particularly in the areas of physical health, energy, and symptoms. To fill important knowledge gaps, more research is needed. For example, future studies in well-defined IPF patient populations should rigorously assess the psychometric properties of different measures of QOL. Currently, there is no disease-specific instrument for use in patients with IPF. A carefully developed, IPF-specific instrument that includes items most relevant to IPF patients should be more sensitive to change than existing generic or non-IPF respiratory disease-specific instruments. Longitudinal assessments are needed to map the trajectory of QOL in relation to disease progression and to reveal whether different aspects of QOL become impaired over time. Addressing these research opportunities will markedly improve our knowledge of this outcome, which is highly valued by patients. These endeavors will also help clinicians who care for patients with IPF to develop a better understanding of its profound negative impact, and it will help future IPF clinical investigators to select the most valid, reliable, and appropriate QOL instrument to fill the roles their studies require.

Disease Progression↗

PubMed2004

Condom use by women recently diagnosed with a sexually transmitted infection: effects of study methodology on the apparent influence of hormonal/surgical contraception.

OBJECTIVE/GOAL: The objective of this study was to investigate potential predictors of consistent condom use (CCU), including the influence of hormonal contraception/surgical sterilization (HC/SS). STUDY: Regression methods were used to predict CCU and other measures of CU among 214 sexually active, 18- to 45-year-old women previously diagnosed with a sexually transmitted infection. RESULTS: CCU was significantly associated with younger age, African American ethnicity, having casual partners, recent HIV testing, condom use self-efficacy, and concern about partner relationship. HC/SS was not significantly associated with the likelihood of CCU, before (HC/SS, 21.3%, non-HC/SS, 25.3%; odds ratio [OR], 0.798; P=0.4914) or after (OR, 1.209; P=0.5995) controlling for confounders (age, ethnicity, casual partners). Controlling for age and ethnicity eliminated initial significant or near-significant inverse associations between HC/SS and 3 alternative measures of interval condom use ("any use," "number of unprotected acts," "proportion condom-protected contacts") and substantially diminished the association between HC/SS and "condom use at last sex." CONCLUSIONS: Choice of condom use measure and control of confounding variables can substantially affect results when studying potential predictors of condom use such as HC/SS.

Adolescent↗

PubMed2003

Correlates of sexual risk for HIV infection in female members of heterosexual California Latino couples: an application of a Bernoulli process model.

Individual HIV risk estimates were generated from reported sexual behavior for 1,146 California Latino Couples Study participants (573 couples). These Bernoulli process model-based estimates proved strongly associated with individual sexually transmitted disease history. Mean estimated background risk from sexual contacts other than with their primary partner was substantially lower for the females than the males (1.4 vs. 7.4 per 10,000). After including their chance of infection from each other, mean net estimated risk was higher for the females than the males (9.2 vs. 8.6 per 10,000). Individual background risk was predicted by individual demographic and psychosocial characteristics (females: coefficient of concordance C = 0.84 predicting any (nonzero) risk; adjusted R(2) = 36% predicting level of risk, given any risk; males: C = 0.78; R(2) = 24%). Characteristics of women with higher risk primary partners were also identifiable (C = 0.65; R(2) = 13%). There was no significant negative association between the male partner's background sexual risk and the aggregate infectivity of the woman from him (taking into account the total number of their condom-protected and unprotected acts of different types).

Adolescent↗

PubMed2002

Home-based asthma education of young low-income children and their families.

OBJECTIVE: To conduct a controlled trial of a home-based education program for low-income caregivers of young children with asthma. METHODS: Participants were randomized to treatment-eight weekly asthma education sessions adapted from the Wee Wheezers program (n = 49)-or usual care (n = 46). Baseline and 3- and 12-month follow-up data were gathered from caregivers and from children's medical records. RESULTS: Treatment was associated with less bother from asthma symptoms, more symptom-free days, and better caregiver quality of life at follow-up for children 1-3, but not those 4-6, years of age. Treatment and control groups did not differ in caregiver asthma management behavior or children's acute care utilization. CONCLUSIONS: This home-based asthma education program was most effective with younger children; perhaps their caregivers were more motivated to learn about asthma management. Targeting psychosocial factors associated with asthma morbidity might also enhance the efficacy of asthma education for these families.

Asthma↗

PubMed2002

Healthcare utilization by women in a comprehensive managed care population subsequent to diagnosis of a sexually transmitted disease.

BACKGROUND: Healthcare utilization (HCU) following a sexually transmitted disease (STD) diagnosis is poorly characterized. GOAL: The goal was to quantify HCU for new/recurrent STDs and other relevant Ob-Gyn and mental health problems in the 18 months subsequent to an STD diagnosis. STUDY DESIGN: We compared HCU between a group of females aged 18 to 45 years who were Kaiser Permanente Medical Program members with a diagnosed STD (n = 1,205) and a medical center- and age group-matched sample of women seen for a non-STD diagnosis in the same time period (n = 4820), with controlling where appropriate for age, medical center, and chronic disease status. RESULTS: An STD diagnosis was associated with significantly greater likelihood of subsequent visits for STDs (relative risk [RR] = 3.8), pelvic inflammatory disease/endometritis (RR = 2.9), candidiasis (RR = 2.0), vaginitis (RR = 2.4), cervical dysplasia (RR = 1.7), menstrual disorders/abnormal bleeding (RR = 1.3), high risk/complicated/ectopic pregnancy (RR = 1.5), and behavioral/mental health problems (RR = 1.3) than for women seen for a non-STD diagnosis. CONCLUSION: Detrimental sequelae of STDs are reflected in substantially elevated near-term HCU following an STD diagnosis.

Adult↗