Uncertainties experienced by parents of children diagnosed with severe combined immunodeficiency through newborn screening.

Individuals with severe combined immunodeficiency (SCID), a group of rare, genetic conditions, are at risk for life-threatening illnesses unless diagnosed and treated early. Even after early identification through newborn screening, parents of children with SCID embark on a complex journey marked by a variety of informational and emotional support needs. This paper explored the types of uncertainties experienced by parents of a child with SCID diagnosed through newborn screening. We conducted semi-structured interviews with 26 parents to discuss the types of uncertainty experienced, including scientific, practical, personal, and existential. Each interview was recorded, transcribed, and coded. Using deductive and inductive content analysis, we describe the type of uncertainty experienced across each stage of the SCID journey. We found that uncertainties in the SCID journey were chronic and multifaceted. Some uncertainties were more prominent at certain points of the journey whereas others spanned multiple stages. Parents expressed a variety of negative emotional reactions to uncertainty, from anxiety, worry, and fear, to doubt, guilt, or grief, and even anger, frustration, and depression. The results speak to the need for healthcare providers to prepare parents for the SCID journey by providing resources to help manage and cope with uncertainty.

Parental coping with uncertainties along the severe combined immunodeficiency journey.

BACKGROUND: Severe combined immunodeficiency (SCID) is a group of rare genetic disorders that cause disruption in immune system functioning. Parents of children with SCID experience many uncertainties related to their child's diagnosis, treatment, recovery, and quality of life. To fully understand parents' experiences throughout their SCID journey, it is important to explore the stressors generated by such uncertainties and how parents cope with these stressors. METHODS: We conducted 26 in-depth interviews with parents whose child was diagnosed with SCID or a SCID-like condition through newborn screening. The interviews explored uncertainties related to their child's diagnosis and how parents coped with these uncertainties. Transcripts were generated from the interviews and analyzed using an inductive content analysis approach which included data immersion, generation and assignment of codes, and interpretation. RESULTS: Parents used a variety of behavioral, cognitive, and affective coping strategies which evolved throughout their SCID journeys. Some parents reported coping by playing an active role in their child's treatment, which included reaching out to other SCID parents or seeking second medical opinions. Other types of coping included establishing house hygiene rules, thinking positively about the child's treatment progress, and relying on family members for help. These coping strategies were both deliberate and intuitive. Participants also described their struggles in coping with stressors related to their child's health and survival. They reported difficulty in processing their emotions and experiencing denial and guilt related to their child's diagnosis. Some parents adapted to ongoing uncertainties through such strategies as positive thinking, self-reflection, and relying on family and community. With successful adaptation, parents emphasized that they continue to use these strategies today. CONCLUSION: Our assessment revealed that parents of children diagnosed with SCID use a variety of behavioral, cognitive, and affective approaches to cope with SCID uncertainties. Although parents reported challenges in coping with SCID uncertainties, they also reported finding ways to overcome these stressors and establish patterns of effective coping. Findings from our study can serve as a guide for parents whose child was newly diagnosed with SCID and for providers such as social workers, genetic counselors, and psychologists.

The influence of state-level policy environments on the activation of the Medicaid SBIRT reimbursement codes.

AIMS: To examine how institutional constraints, comprising federal actions and states' substance abuse policy environments, influence states' decisions to activate Medicaid reimbursement codes for screening and brief intervention for risky substance use in the United States. METHODS: A discrete-time duration model was used to estimate the effect of institutional constraints on the likelihood of activating the Medicaid reimbursement codes. Primary constraints included federal Screening, Brief Intervention and Referral to Treatment (SBIRT) grant funding, substance abuse priority, economic climate, political climate and interstate diffusion. Study data came from publicly available secondary data sources. RESULTS: Federal SBIRT grant funding did not affect significantly the likelihood of activation (P = 0.628). A $1 increase in per-capita block grant funding was associated with a 10-percentage point reduction in the likelihood of activation (P = 0.003) and a $1 increase in per-capita state substance use disorder expenditures was associated with a 2-percentage point increase in the likelihood of activation (P = 0.004). States with enacted parity laws (P = 0.016) and a Democratic-controlled state government were also more likely to activate the codes. CONCLUSION: In the United States, the determinants of state activation of Medicaid Screening, Brief Intervention and Referral to Treatment (SBIRT) reimbursement codes are complex, and include more than financial considerations. Federal block grant funding is a strong disincentive to activating the SBIRT reimbursement codes, while more direct federal SBIRT grant funding has no detectable effects.

Program- and service-level costs of seven screening, brief intervention, and referral to treatment programs.

This paper examines the costs of delivering screening, brief intervention, and referral to treatment (SBIRT) services within the first seven demonstration programs funded by the US Substance Abuse and Mental Health Services Administration. Service-level costs were estimated and compared across implementation model (contracted specialist, inhouse specialist, inhouse generalist) and service delivery setting (emergency department, hospital inpatient, outpatient). Program-level costs were estimated and compared across grantee recipient programs. Service-level data were collected through timed observations of SBIRT service delivery. Program-level data were collected during key informant interviews using structured cost interview guides. At the service level, support activities that occur before or after engaging the patient comprise a considerable portion of the cost of delivering SBIRT services, especially short duration services. At the program level, average costs decreased as more patients were screened. Comparing across program and service levels, the average annual operating costs calculated at the program level often exceeded the cost of actual service delivery. Provider time spent in support of service provision may comprise a large share of the costs in some cases because of potentially substantial fixed and quasifixed costs associated with program operation. The cost structure of screening, brief intervention, and referral to treatment is complex and discontinuous of patient flow, causing annual operating costs to exceed the costs of actual service provision for some settings and implementation models.

Income disparities in the quality of life of cancer survivors.

BACKGROUND: Studies of cancer survivors usually report positive correlations between income and health-related quality of life (QoL). These correlations cannot necessarily be interpreted as income disparities because earnings and income are affected by health, as well as the reverse. OBJECTIVES: The goal of this study was to quantify income disparities in QoL among cancer survivors by using instrumental variables (IV) to assess and, if necessary, correct for reverse causality. METHODS: We constructed an instrumental variable for income from home ownership, sources of unearned income, marital status at diagnosis, and spousal characteristics. Then, we examined income's effect on QoL in regressions controlling for other clinical and demographic predictors of QoL. The data were from interviews in 2002 with a cohort of cancer survivors who were 25 to 62 years of age when diagnosed during 1997 to 1999. MEASURES: The Functional Assessment of Cancer Therapy-General (FACT-G) and the SF-12 measured QoL in multiple domains. Questions adapted from the Health and Retirement Study ascertained the ratio of annual family income to the poverty threshold in 2001. RESULTS: Endogeneity tests were sensitive to assumptions of linearity for the income-QoL relationship and the choice of QoL measure. Consistently estimated income disparities were significant in all QoL models. The income elasticity of QoL ranged from 2% to 10%. CONCLUSIONS: There are income-related disparities in the QoL of cancer survivors that cannot be explained away by the effect of health on earnings. High-income patients are not only more likely to survive cancer, but they enjoy better QoL as survivors.