Health-related quality of life across disease stages in patients with amyotrophic lateral sclerosis: results from a real-world survey.

Background: Amyotrophic lateral sclerosis (ALS) is characterized by a rapid disease course, with disease severity being associated with declining health-related quality of life (HRQoL) in persons living with ALS (pALS). The main objective of this study was to assess the impact of disease progression on HRQoL across King's, Milano-Torino Staging (MiToS), and physician-judgement clinical staging. Additionally, we evaluated the impact of the disease on the HRQoL of care partners (cALS).

Consumers' and health providers' views and perceptions of partnering to improve health services design, delivery and evaluation: a co-produced qualitative evidence synthesis.

Background: Partnering with consumers in the planning, delivery and evaluation of health services is an essential component of person-centred care. There are many ways to partner with consumers to improve health services, including formal group partnerships (such as committees, boards or steering groups). However, consumers' and health providers' views and experiences of formal group partnerships remain unclear.

Pharmacological and Psychotherapeutic Interventions for Management of Obsessive-compulsive Disorder in Adults: A Systematic Review and Network Meta-analysis.

Reprinted under Creative Commons CC-BY license.

All in the Family: Living With ADNP Syndrome.

Purpose: The overarching purpose of this research was to examine the experiences of 1 family living with a child with Helsmoortel-Van Der Aa syndrome or activity-dependent neuroprotective protein (ADNP) syndrome.

Design: A retrospective qualitative design was used for this study.

Methods: Two primary caregivers for a 5-year-old child with ADNP syndrome completed background questionnaires to provide context for semistructured interviews.

Applying activity theory to undergraduate medical curriculum reform: Lessons in contradictions from multiple stakeholders' perspectives.

Purpose: Medical school curricula require regular updating. We adopted an activity theory lens to conduct a holistic, multiple stakeholder-informed analysis of curricular reform, aiming to understand how the social relations between groups contribute to unanticipated tensions and outcomes.

Methods: A research assistant conducted semi-structured interviews with purposively sampled ( = 19) administrative staff, faculty course leads, faculty tutors, curriculum developers, change leaders and student leaders.