Empowering Patients and Families to Create, Inform and Endorse a New Patient and Family Declaration of Values.

In 2019, Niagara Health embarked on a partnership journey to develop the Patient and Family Declaration of Values (PFDoV). The initiative leveraged all five International Association for Public Participation domains of engagement, integrating patient partners (PPs) in all facets of co-design methodology including planning, data collection, analysis and document formation. A qualitative data analysis in grounded theory yielded seven themes forming the PFDoV, fully endorsed by the executive team and board of directors. The model of engagement and co-design empowered PPs to take ownership of the PFDoV creation. This article describes the strengths, weaknesses and lessons learned from our approach.

A patient and family data domain collection framework for identifying disparities in pediatrics: results from the pediatric health equity collaborative.

BACKGROUND: By 2020, the child population is projected to have more racial and ethnic minorities make up the majority of the populations and health care organizations will need to have a system in place that collects accurate and reliable demographic data in order to monitor disparities. The goals of this group were to establish sample practices, approaches and lessons learned with regard to race, ethnicity, language, and other demographic data collection in pediatric care setting. METHODS: A panel of 16 research and clinical professional experts working in 10 pediatric care delivery systems in the US and Canada convened twice in person for 3-day consensus development meetings and met multiple times via conference calls over a two year period. Current evidence on adult demographic data collection was systematically reviewed and unique aspects of data collection in the pediatric setting were outlined. Human centered design methods were utilized to facilitate theme development, facilitate constructive and innovative discussion, and generate consensus. RESULTS: Group consensus determined six final data collection domains: 1) caregivers, 2) race and ethnicity, 3) language, 4) sexual orientation and gender identity, 5) disability, and 6) social determinants of health. For each domain, the group defined the domain, established a rational for collection, identified the unique challenges for data collection in a pediatric setting, and developed sample practices which are based on the experience of the members as a starting point to allow for customization unique to each health care organization. Several unique challenges in the pediatric setting across all domains include: data collection on caregivers, determining an age at which it is appropriate to collect data from the patient, collecting and updating data at multiple points across the lifespan, the limits of the electronic health record, and determining the purpose of the data collection before implementation. CONCLUSIONS: There is no single approach that will work for all organizations when collecting race, ethnicity, language and other social determinants of health data. Each organization will need to tailor their data collection based on the population they serve, the financial resources available, and the capacity of the electronic health record.

Untapped Potential: Engaging in Meaningful Client and Family Partnerships to Drive High-Quality, Safe Care.

Holland Bloorview Kids Rehabilitation Hospital developed an innovative framework that fully integrates 17 family and youth leaders into its accreditation preparation process to drive its quality and safety improvements. The hospital established a formalized committee, the Family Leader Accreditation Group (FLAG), where staff and family leaders (FLs), partnered equally to meet, update and share quality and safety initiatives as part of the accreditation preparedness process. The Quality, Safety and Performance (QSP) team was driven to partner more deeply with clients and families to advance quality and safety.

Circulating and synovial levels of IGF-I, cytokines, physical function and anthropometry differ in women awaiting total knee arthroplasty when compared to men.

PURPOSE: Determine if gender differences in osteoarthritis relate to cytokine and growth factor levels. METHODS: Cross-sectional comparison of serum and synovial concentrations of cytokines (IL-1alphabeta, TNF-alpha, IL-6), growth factors (IGF-I, TGF-beta, IRAP), physical performance and perceived function in total knee arthroplasty candidates (TKAC) (n=17) and healthy controls (n=21) was done. RESULTS: Serum IGF-I values were reduced in female (TKAC 137.6+/-7.2; Controls 160.2+/-26.2) but not male TKAC (TKAC 182.6+/-18.4; Controls 184.0+/-18.4) (p<0.05).). Serum and synovial levels of cytokines and growth factors did not differ significantly by group or gender. Physical performance testing (SPW, TUG) revealed significant group and gender differences (p=0.001) with women demonstrating greater functional impairment. DISCUSSION: A systemic, not local component to OA pathophysiology may exist for female TKAC. Male TKAC were less impaired, and their IGF-I levels differ little from Control values.

Physical activity and its relationship to physical performance in patients with end stage knee osteoarthritis.

STUDY DESIGN: Cross-sectional observational design. OBJECTIVES: To compare physical activity levels in men and women with end-stage knee osteoarthritis to those of a comparison group and to examine the relationship between physical activity level and physical performance. BACKGROUND: Osteoarthritis of the knee is associated with significant losses in functional performance and high social costs. Although reductions in physical activity are reported, they have not been quantified or explored. METHODS AND MEASURES: Fifty-nine candidates awaiting total knee arthroplasty (TKAC group) and 79 individuals without osteoarthritis (comparison group) participated. Physical activity was assessed using the Voorrips Questionnaire. Performance measures included fast self-paced walk test, timed up-and-go test, and a timed stair performance measure. A subset of subjects completed the Western Ontario and McMaster Universities Osteoarthritis Index (WOMAC) and underwent muscular strength and endurance testing. The effects of gender and group were tested using GLM ANOVA. Pearson product moment correlations were used to examine relationships between the variables. RESULTS: All aspects of physical activity were lower (P<.001) in the TKAC group, with a moderate difference in household score (18%) and a large difference in leisure activities (63%). Unlike the comparison group, modest but significant correlations (r = 0.31-0.33, P<.03) were observed between overall physical activity and performance test scores for the TKAC group. Physical activity was not significantly related to pain reported on the WOMAC or during the performance tasks. CONCLUSIONS: The belief that pain limits the physical activity of patients with severe osteoarthritis requires further investigation. The profound differences between a comparison group and patients with end-stage osteoarthritis in physical activity have critical implications for the well-being and effective treatment of this population.

Individuals' experience of living with osteoarthritis of the knee and perceptions of total knee arthroplasty.

This study investigated the physical and psychosocial consequences of living with osteoarthritis (OA) in daily life and peoples' views of total knee arthroplasty (TKA) and the role of physiotherapy. In-depth interview data were used from a prospective qualitative study conducted by the senior author (KY). Participants were 15 volunteers with knee OA who were awaiting TKA at a specialized orthopaedic tertiary care facility in Toronto. A modified grounded theory method approach was used to analyze the interview data. The findings showed that experiences for the participants with OA were conceptualized as a "breakpoint." The breakpoint was centred on the experiences/processes of living with unremitting pain, the limitations of mobility, leisure and social activities, and the resulting consequences to the participant's physical and psychological well-being. In addition to the above experiences, participants also discussed their perceptions of TKA surgery. The findings showed that expectations of TKA were linked to participants' knowledge of the procedure and its outcomes. The participants listed acquaintances, friends, family members, and doctors as the main sources of knowledge for TKA. On the basis of the above analysis, recommendations are made for developing a preoperative physiotherapy program that would focus on minimizing preoperative disability and maximizing postoperative recovery.

Women awaiting knee replacement have reduced function and growth hormone.

Women experience greater functional impairment and occurrence of osteoarthritis than men. We hypothesized that lower levels of serum insulin-like growth factor-I may contribute to gender differences in physical impairments. A cross-sectional comparison (n = 139) was done on candidates having total knee arthroplasty and healthy controls subjects of similar age (range, 55-75 years). Physical function, perceived function, and serum insulin-like growth factor levels were compared across group and gender using analysis of variance. Insulin-like growth factor-I values were markedly reduced in women overall and women having surgery had significantly reduced levels despite lean body mass correction. Values consistent with clinical hormone deficiency were observed in 21% of women and only 4% of men having arthroplasty. Physical function was markedly reduced in women, at times functioning only 33% when compared with healthy women, whereas men's limitations were not as profound. The current findings indicate that physical function is more impaired and serum insulin-like growth factor-I is markedly reduced in women awaiting arthroplasty than their male counterparts. The gender differences observed biochemically and with functional performance indicate that the pathophysiology of end stage osteoarthritis may differ between men and women.

Comparison of gender and group differences in self-report and physical performance measures in total hip and knee arthroplasty candidates.

Functional measures (fast self-paced walk test, stair climb, and timed up and go) and a self-report measure of function (Lower Extremity Activity Profile) were assessed in 1,805 total hip (761) and knee (1044) arthroplasty candidates (1,063 women, 742 men) preoperatively. Women represented 59% of the study subjects and showed greater disability than men (P

The relationship between self-report and performance-related measures: questioning the content validity of timed tests.

OBJECTIVE: To examine the determinants of the modest correlation between self-report and performance-related measures in patients with osteoarthritis of the hip or knee. METHODS: Measures included the Lower Extremity Functional Scale (LEFS), the self paced walk, timed up-and-go, and stair test. Each performance measure consisted of 3 domains: time, pain (visual analog scale), and exertion (Borg scale). Activity specificity was assessed by examining correlations between the LEFS with single activity and multiple activity time scores. Domain specificity was examined by comparing correlations between the LEFS and single and multiple domain scores. The impact of measurement error was considered. RESULTS: Increasing the number of activity time scores had no effect. Forming a composite performance score based on time, pain, and exertion substantially increased the correlation from 0.44 (composite timed score) to 0.59 (pooled domain and activity score) (P = 0.009). CONCLUSION: Performance scores based on time alone appear to inadequately represent the breadth of health concepts associated with functional status.

Ventilation threshold as a measure of impaired physical performance in adults with growth hormone excess.

OBJECTIVE: Fatigue is a prominent symptom among patients with GH excess and acromegaly. Identifying the physiological basis of such complaints and obtaining objective measures to quantify their severity remains an ongoing challenge. We investigated whether submaximal measures of aerobic performance can be used to assess GH excess-associated fatigue objectively. DESIGN AND PATIENTS: To investigate this possibility we examined the relation between physical function and physical capacity in 12 patients with active acromegaly and persistent fatigue before and after 3 and 6 months of treatment with the long-acting somatostatin analogue octreotide (LAR(R)). MEASUREMENTS: Heart rate (HR) and rating of perceived exertion (RPE using Borg's 10-point scale) were measured during a 160-metre self-paced walk test (SPW). Maximum oxygen uptake (VO2max) and ventilation threshold (VeT: a measure of work rate when breathlessness develops) were measured during a progressive treadmill test to fatigue or symptom-limited maximum. The Profile Of Mood States questionnaire (POMS) was used to quantify subjective feelings of fatigue and vigour. Morning fasting levels of GH and IGF-I were measured using immunoassay of serum samples. RESULTS: SPW speed at a fast pace of 1.69 +/- 0.18 m/s was achieved with higher than normal HR (112 +/- 15/min; normal = 102) and RPE (2.4 +/- 1.2). Similar to GH-deficient adults, VO2max (22.6 +/- 6.4 ml.kg-1.min-1; normal approximately 30 ml.kg-1.min-1) and VeT (13.1 +/- 2.9 ml.kg-1.min-1; predicted normal approximately 16 ml.kg-1(min-1) were low. However, VeT occurred at a normal fraction of VO2max (VeT/VO2max = 0.58). VeT was significantly increased and plasma IGF-I levels reduced following 3 and 6 months of octreotide LAR(R) treatment. Reduction in circulating IGF-I levels was correlated with improvement in reported vigour (r = 0.85) and VeT (r = 0.65) (P < 0.05). CONCLUSIONS: Our findings demonstrate impairment in physical function and physical capacity consistent with the perception of increased fatigue among acromegalic patients. These objective measures of compromised physical function are similar to the changes that we have reported previously in adults with GH deficiency. Taken together, these data suggest that a narrow window for GH/IGF-I levels is required to maintain optimal physical function.