A prospective cohort study examining medical and social factors associated with engagement in life activities following total hip replacement.

OBJECTIVES: Studies show limited improvement in the frequency of engaging in life activities after joint replacement. However, there is a paucity of research that has examined factors, including other life events, which influence engagement following total hip replacement (THR). This research sought to identify factors associated with engaging in life activities following THR. METHODS: A prospective cohort study was conducted with 376 people who had a THR for osteoarthritis (OA). Data were collected pre-surgery and 1 year post-surgery. The primary outcome was change in frequency in engagement in life activities (Late Life Disability Index (LLDI): higher scores indicate higher frequency of engagement (range 0-80)). Analyses included multivariable regression. Factors considered included: positive/negative life events, a new comorbidity, another joint replacement and complications post-surgery. RESULTS: Participants' mean age was 64 years; 46% were male. 68% of participants had at least one comorbidity pre-surgery; 36% reported at least one new comorbidity after surgery. The mean change in LLDI frequency was an increase of 6.29 (±8.10). 36% reported one or more positive impact life events in the year following surgery; 63% reported one or more negative life events. The number of positive life events (beta = 1.24; 95% CI: 0.49, 1.99) was significantly associated with change in LLDI frequency after adjusting for age, sex, education, body mass index (BMI), comorbidities pre-surgery, number of symptomatic joints and pre-surgery pain and function, LLDI limitations and depression. CONCLUSIONS: These findings highlight the significant influence of social factors and life circumstances on engagement in life activities following THR.

Understanding why people do or do not engage in activities following total joint replacement: a longitudinal qualitative study.

OBJECTIVE: Numerous studies report large and significant improvements in basic mobility and activities of daily living following total hip or knee replacement (TJR). Nevertheless, quantitative research has shown minimal increase in participation in activities that benefit overall health. This study explored why people do or do not engage in activities following hip or knee TJR. METHOD: This was a longitudinal qualitative study. Sampling was guided by constructivist grounded theory and data collected using open-ended, semi-structured interviews. Participants were recruited using maximum variation sampling based on age, sex and joint replaced (hip or knee). Data were analysed using a constant comparative approach and coded for thematic patterns and relationships from which overarching themes were constructed. RESULTS: Twenty-nine patients participated in interviews prior to, and 8 and 18 months post following TJR. A high degree of variability with regard to participants' return to activities was found and five emergent themes were identified that accounted for this variability. These themes highlight the importance of issues beyond medical factors alone, such as socio-cultural factors that partially determine participants' participation in activity following TJR. CONCLUSION: Findings suggest that multi-faceted experiences impact participation in activity following TJR. These experiences include changes in identity and lifestyle that preclude a 'return to normal'. There is an urgent need for supports to increase people's activity post-TJR in order to facilitate enhancement of post-surgery levels of engagement. Approaches that take into consideration more personalized interventions may be critical to promoting healthy aging in people with TJR.

Consent for newborn screening: the attitudes of health care providers.

BACKGROUND: As newborn screening (NBS) expands to meet a broader definition of benefit, the scope of parental consent warrants reconsideration. METHODS: We conducted a mixed methods study of health care provider attitudes toward consent for NBS, including a survey (n = 1,615) and semi-structured interviews (n = 36). RESULTS: Consent practices and attitudes varied by provider but the majority supported mandatory screening (63.4%) and only 36.6% supported some form of parental discretion. Few health care providers (18.6%) supported seeking explicit consent for screening condition-by-condition, but a larger minority (39.6%) supported seeking consent for the disclosure of incidentally generated sickle cell carrier results. Qualitative findings illuminate these preferences: respondents who favored consent emphasized its ease while dissenters saw consent as highly complex. CONCLUSION: Few providers supported explicit consent for NBS. Further, those who supported consent viewed it as a simple process. Arguably, these attitudes reflect the public health emergency NBS once was, rather than the public health service it has become. The complexity of NBS panels may have to be aligned with providers' capacity to implement screening appropriately, or providers will need sufficient resources to engage in a more nuanced approach to consent for expanded NBS.

Clinical obligations and public health programmes: healthcare provider reasoning about managing the incidental results of newborn screening.

BACKGROUND: Expanded newborn screening generates incidental results, notably carrier results. Yet newborn screening programmes typically restrict parental choice regarding receipt of this non-health serving genetic information. Healthcare providers play a key role in educating families or caring for screened infants and have strong beliefs about the management of incidental results. METHODS: To inform policy on disclosure of infant sickle cell disorder (SCD) carrier results, a mixed-methods study of healthcare providers was conducted in Ontario, Canada, to understand attitudes regarding result management using a cross-sectional survey (N = 1615) and semistructured interviews (N = 42). RESULTS: Agreement to reasons favouring disclosure of SCD carrier results was high (65.1%-92.7%) and to reasons opposing disclosure was low (4.1%-18.1%). Genetics professionals expressed less support for arguments favouring disclosure (35.3%-78.8%), and more agreement with arguments opposing disclosure (15.7%-51.9%). A slim majority of genetics professionals (51.9%) agreed that a reason to avoid disclosure was the importance of allowing the child to decide to receive results. Qualitatively, there was a perceived "duty" to disclose, that if the clinician possessed the information, the clinician could not withhold it. DISCUSSION: While a majority of respondents perceived a duty to disclose the incidental results of newborn screening, the policy implications of these attitudes are not obvious. In particular, policy must balance descriptive ethics (ie, what providers believe) and normative ethics (ie, what duty-based principles oblige), address dissenting opinion and consider the relevance of moral principles grounded in clinical obligations for public health initiatives.

A systematic review of the effects of disclosing carrier results generated through newborn screening.

Evidence on the effects of disclosing carrier results identified through newborn screening (NBS) is needed to develop effective strategies for managing these results, and to inform debate about contradictory policies governing genetic testing in minors in the context of NBS relative to clinical care. This is likely to be even more important as technological opportunities for carrier identification through NBS increase. We report the results of a systematic review of evidence related to the generation of carrier results through NBS to summarize what is known about: (1) the outcomes associated with these results; (2) the best strategies for providing information and follow-up care to parents; and (3) the impact they have on reproductive decision-making. Our study expands the existing body of knowledge and identifies gaps in the evidence base. As key players in the management of carrier results clinically, genetic counselors are well positioned to engage in formative research and policy development in this area.