Patients' attitudes and preferences toward delayed disease progression in the absence of improved survival.

BACKGROUND: Cancer patients' attitudes toward progression-free survival (PFS) gains offered by treatment are not well understood, particularly in the absence of overall survival (OS) gains. The objectives were to describe patients' willingness to accept treatment that offers PFS gains without OS gains, to compare these findings with treatments offering OS gains, and to qualitatively summarize patients' reasons for their preferences. METHODS: A multicenter, cross-sectional, convergent mixed-methods study design recruited patients who had received at least 3 months of systemic therapy for incurable solid tumors. A treatment trade-off exercise determined the gains in imaging PFS that patients require to prefer additional systemic treatment for a scenario of a newly diagnosed, asymptomatic, incurable abdominal tumor. A qualitative, descriptive, thematic analysis explored factors influencing patients' decisions, and a narrative method integrated the quantitative and qualitative findings. RESULTS: In total, 100 patients participated (63% were older than 60 years of age). If additional treatment with added toxicity offered no OS advantage, 17% would prefer it for no PFS benefit; 26% for some PFS benefit (range, 3-9 months), whereas 51% would decline it regardless of PFS benefit. Similarly, 71% preferred additional treatment offering a 6-month OS advantage dependent on described toxicity levels (P = .03). A spectrum of reasons for these preferences reflected the complexity of participants' attitudes and values. CONCLUSIONS: Prolongation of time to progression was not universally valued. Most patients did not prefer treatments that negatively affect quality of life for PFS gains alone. Implications for individual decision making, policy, and trials research are discussed.

Engaging the Voices of Children: A Scoping Review of How Children and Adolescents Are Involved in the Development of Quality-of-Life-Related Measures.

OBJECTIVES: Patient-reported outcomes are increasingly recommended to guide patient care, develop and evaluate interventions, and modify health systems. However, not enough is known about whether and how children and adolescents, as "experts" in their own health and quality of life (QoL), are being engaged in the development of instruments. Our goals in this review were (1) to identify all QoL-related instruments that have included children and/or adolescents in the development of questionnaire content, including identification of themes and items; and (2) to report how this was done; and (3) to highlight those that used qualitative methods. METHODS: MEDLINE and Embase were searched for child- or adolescent-completed QoL-related instruments, supplemented by hand-searching of relevant reviews until 2020. Original development papers were identified and retrieved when possible, from which instrument characteristics and details of qualitative development methods were extracted. RESULTS: We identified 445 instruments, of which 88 used qualitative methods for content development. Interviews and focus groups were the most common methods. A variety of play techniques were used to engage the child and adolescent participants. The specific criteria for the inclusion of children and adolescents (age, developmental stage, duration, and nonclinical location) varied considerably. CONCLUSIONS: Researchers frequently involve children and adolescents in qualitative methods when developing QoL-related measures; however, there is little information about the methods used. Better reporting of methodology, improved dissemination of methods guidelines, and research into optimal ways of including children and adolescents in the process of instrument development would be useful.

The concept of resilience in childhood disability: Does the International Classification of Functioning, Disability and Health help us?

BACKGROUND: The concept of resilience is popular in both the mainstream media and in health and human services research. Over the last 40 years, the term has been moulded and transformed from the idea of a trait that can be fostered within the individual towards a transactional concept with an emphasis on environmental factors. Although many current definitions are used to describe and talk about resilience, the dynamism of the concept is a common element across most current discussions and research applications. This paper provides an opportunity to place the concept of resilience within a framework for future application at the clinical frontlines. METHODS: An extensive scoping review on the existing literature was undertaken to explore recurring themes associated with resilience in families and children, particularly in the context of childhood disability. This literature was mapped and categorized in the context of World Health Organization's International Classification of Functioning, Disability and Health (ICF) framework to create recommendations for practical application by health professionals. FINDINGS: Three major themes emerged: (a) the idea of resilience as a state of an individual at a specific point in time rather than a built-in trait; (b) the idea of resilience as dynamic rather than static; and (c) the value of a framework into which to place the components of "resilience." CONCLUSIONS: The relative ease with which resilience concepts is situated within the ICF is an indication that the ICF framework provides a useful way to incorporate concepts of resilience for clinical application.