Browsing by Author "Santana, Maria Jose"
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- ItemOpen AccessCo-designing strategies to support patient partners during a scoping review and reflections on the process: a commentary(2021-05-10) McCarron, Tamara L; Clement, Fiona; Rasiah, Jananee; Moffat, Karen; Wasylak, Tracy; Santana, Maria JoseAbstract Background Patient partners can be described as individuals who assume roles as active members on research teams, indicative of individuals with greater involvement, increased sharing of power, and increased responsibility than traditionally described by patient participants who are primarily studied. A gap still remains in the understanding of how to engage patients. The objective of this commentary is to describe the involvement of four patient partners who worked with researchers during a scoping review. Main body We describe approaches to meaningfully engage patient partners in conducting a scoping review. Patient partners were recruited through existing patient networks. Capacity development in the form of the training was provided to these four patient partners. Engagement strategies were co-designed with them to address potential barriers of involvement and acquiring the necessary skills for the successful completion of this scoping review. Conclusion Involving patients partners early in the project established the foundational relationship so patient partners could contribute to their fullest. We witnessed the success of working alongside patient partners as members of the research team with a clear and mutually agreed upon purpose of the engagement in health research activities and how this seemed to contribute to an effective and rewarding experience for both researcher and patient partner.
- ItemOpen AccessCOVID-19 and Comorbidities: A Summary of Findings(American Journal of Infection Control, 2020-07-13) Bajgain, Bishnu Bahadur; Badal, Sujan; Thapa Bajgain, Kalpana; Santana, Maria JoseThe novel coronavirus disease (COVID-19), a global pandemic which first originated in the Wuhan City of China has affected nearly 12.2 million individuals leading to a devastating death toll of 553,438 globally.
- ItemOpen AccessDevelopment and Acceptability of an Adolescent Self-Management Program for Juvenile Idiopathic Arthritis(2020-09-04) Chomistek, Kelsey; Schmeling, Heinrike; Barnabé, Cheryl Carmelle Marie; Santana, Maria Jose; Stinson, Jennifer N.Juvenile idiopathic arthritis (JIA) is a chronic inflammatory disease in children diagnosed under the age of 16 years. The overarching aim of this thesis was to develop and evaluate the acceptability of a self-management program (SMP) for adolescents with JIA. A systematized review of literature was conducted to understand the effectiveness of pre-existing self-management interventions for adolescents with JIA. The findings of this review provided insight into the key elements of our SMP, including the creation of a multicomponent and multisession intervention. In the development phase, the content, format, and structure of our program was determined using a previously completed needs assessment for adolescents with JIA and additional input from adolescents with JIA and interdisciplinary pediatric rheumatology health professionals at the Alberta Children’s Hospital. The program incorporated knowledge from the Public Health Ontario Program Planner framework and Lorig’s self-management theory. Semi-structured focus groups were conducted with adolescents with JIA and healthcare providers to examine the acceptability of the SMP. Finally, thematic analysis of the focus groups was performed to evaluate the acceptability of the program. Findings from the qualitative phase revealed that adolescents and healthcare providers appreciated the program. Participants provided valuable recommendations to improve its structure, design aesthetics, and content prior to conducting future feasibility and effectiveness trials. The findings from this thesis contribute to existing research on the development and acceptability of group-based, in-person, and videoconference SMP for adolescents with JIA and could inform future feasibility and effectiveness trials.
- ItemOpen AccessEnhancing Person-Centred Practice in Primary Care: Co-designing Strategies to Implement Quality Indicators Informed by the Patient Perspective(2022-03) Manalili, Kimberly; Santana, Maria Jose; Scott, Catherine; O'Beirne, Maeve; Hemmelgarn, BrendaPerson-Centred Care (PCC) promotes engagement with patients and caregivers to improve patient experiences and outcomes. Person-Centred Quality Indicators (PC-QIs) are quality improvement (QI) tools that support healthcare providers and organizations to identify gaps in the delivery of PCC and improve the quality of care for patients. Little is known about how to implement PC-QIs effectively so that they are adopted and used to create meaningful change in practice. We aimed to address these knowledge gaps by applying a person-centred and implementation science lens to QI and collaborate with stakeholders to inform the future implementation of PC-QIs for primary care in Alberta, Canada. The first study of this thesis was a systematic review and meta-analysis on the effectiveness of person-centred QI strategies on the management of hypertension in primary care. Our findings suggest that consistent features of person-centered QI interventions that were effective for improving hypertension outcomes included tailored communication with patients, use of health information technology, and multidisciplinary collaboration. The second and third studies of this thesis were mixed methods studies focussed on co-designing the implementation of the PC-QIs for future use in primary care in Alberta. In study two, our findings from an organizational readiness survey and interviews conducted with participants representing both Canadian system-level and Alberta clinical primary care perspectives shed light on key factors that may influence implementation. These factors included: the organization or clinics’ interest and motivation to implement the PC-QIs, resources and capacity to collect and use data for improvements, and the organizational climate for implementation of the PC-QIs, related to PCC and QI. In the third study, we conducted a consensus process with primary care stakeholders to prioritize the PC-QIs for implementation and implementation strategies that were identified, which emerged from our second study. Consensus panelists prioritized PC-QIs related to: patient and caregiver involvement in decisions about care, having a trusting relationship with the healthcare provider, health information technology to support PCC, co-designing care in partnership with communities, and overall experience. The strategies prioritized included: developing partnerships among stakeholder groups, obtaining QI resources, conducting a needs assessment, aligning measurement efforts provincially, and engaging champions.
- ItemOpen AccessHow Do Transitions Within End-Stage Renal Disease Impact Health-Related Quality of Life?(2018-08-31) Dumaine, Chance Skylar; MacRae, Jennifer; Ravani, Pietro; Santana, Maria Jose; Samuel, Susan M.Dialysis is used to sustain life for patients with end-stage renal disease (ESRD). While dialysis prolongs length of life, numerous studies have shown that dialysis patients have significantly reduced health-related quality of life (HRQoL). The degree of impairment seems to be partially related to dialysis modality [in-centre hemodialysis (IHD), peritoneal dialysis (PD), or home hemodialysis (HHD)], as patients on PD/HHD often have higher HRQoL scores than IHD patients. Patients may change dialysis modalities a number of times during their life. Each change is accompanied by a “transition period” (period of time in which patients adapt to life on their new modality). These transition periods are often marked by high rates of anxiety, depression, morbidity, and mortality, and are periods when HRQoL may change rapidly. However, few studies have examined the magnitude of change in HRQoL during transition periods or what the drivers of change are. Such studies are necessary to ensure that patients are provided with the necessary supports during their modality transition to prevent declines in HRQoL. In this pilot project, we tested the methodology of combining kidney disease-specific HRQoL questionnaires (Kidney Disease Quality of Life surveys) with semi-structured interviews in patients undergoing dialysis modality transitions. Patients completed KDQOL surveys prior to and 3 months after initiating a new dialysis modality and participated in semi-structured interviews to describe changes in HRQoL that occurred during the transition period. Regardless of dialysis modality being initiated, mean HRQoL scores as measured by the five domains of the KDQOL-36 improved over the initial 3 months of the transition period. Scores in additional domains of the KDQOL-Short Form were more variable, with improvements in some domains but reductions in others. Patient interviews highlighted many factors that negatively impacted HRQoL which may be amenable to intervention. Overall, combining the KDQOL tools with semi-structured patient interviews proved to be an effective method of studying changes in HRQoL that occur during modality transitions. Future studies may consider implementation of this model on a larger scale in order to better understand transition periods and to test interventions to prevent declines in HRQoL.
- ItemOpen AccessMeasurement Validity of the Seattle Angina Questionnaire in Coronary Artery Disease(2023-04-06) Lawal, Oluwaseyi Adetutu; Sajobi, Tolulope Timothy; Awosoga, Oluwagbohunmi Adetunji; James, Matthew Thomas; Santana, Maria JosePatient-reported outcome measures (PROMs), such as the Seattle angina questionnaire (SAQ), are widely used to directly elicit perceptions of health status and quality of life (QOL) in individuals with coronary artery disease (CAD). The SAQ has been used in clinical and epidemiological studies to evaluate the effectiveness of treatment interventions, compare population groups, and inform quality improvement for CAD management. However, there is limited investigation of its measurement validity between groups and over time. The overarching goal of this research is to evaluate the validity of the SAQ in individuals with CAD between groups and over time. Specifically, the objectives are to (1) examine the factorial validity of the SAQ in a Canadian population of patients with CAD, (2) assess if the SAQ construct is equivalent across subgroups and over time and (3) test and adjust for response shift (RS) effect in the SAQ subscales over time. Data for this research were obtained from the Alberta Provincial Project on Outcome Assessment in Coronary Heart Disease (APPROACH) registry, a comprehensive, longitudinal inception cohort of all adult Canadians who received cardiac catheterization in Alberta, Canada. Exploratory and Confirmatory factor analysis (CFA) was used to investigate the underlying factor structure of the SAQ. CFA revealed that the factorial structure of the original 19-item SAQ, with five subscales, was inconsistent in this cohort. Instead, a 16-item Canadian version of this SAQ (SAQ-CAN), which includes four subscales, was found to be a better fit for the data and was a more valid and reliable instrument to measure QOL in CAD patients. Multigroup-CFA of the SAQ-CAN provides evidence supporting the equivalence of the underlying latent construct across sex, age, angina type, and treatment groups cross-sectionally and longitudinally in a sample of patients with CAD. Finally, the longitudinal structural equation model revealed the presence of small RS effects in the treatment-related experience subscale of the SAQ-CAN, which attenuated longitudinal changes on the SAQ-CAN subscales when not accounted for. In conclusion, this study proposes the use of SAQ-CAN as a valid and reliable instrument for assessing differences and temporal measures of QOL in individuals with CAD.
- ItemOpen AccessA Mixed-Methods Exploration to Develop and Test the Alberta Cardiac Surgery Patient Experiences Survey(2020-12-29) Kemp, Kyle Alexander Robert; Quan, Hude; Santana, Maria Jose; Knudtson, Merril L.; Oddone-Paolucci, ElizabethWith an increased focus on patient-centred care (PCC), many organizations conduct routine surveys as part of their core business. Many surveys that are used in the hospital setting have been designed to capture the experiences of a wide variety of patients. Thus, they do not ask condition-specific questions which may be important to patients. This mixed-methods thesis focused on examining and improving upon the measurement of patient experience among those who have undergone cardiac surgery. The first part of this thesis used existing survey data linked with administrative records to examine the comprehensive experience of Albertans who underwent cardiac surgery over a four-year period. Part two was a qualitative project, where interviews were conducted to better understand the aspects of care deemed important to patients after cardiac surgery. In the final portion, learnings from our prior quantitative and qualitative work were integrated to develop and test a new condition-specific survey; the Alberta Cardiac Surgery Patient Experiences Survey (ACSPES). In project one, patients reported very positive experiences. However, they did reveal potential areas for improvement. These included communication about potential side effects of new medications, night noisiness of the hospital environment, and cleanliness of their room/bathroom. In project two, participants highlighted five key themes important in their care - overall experience, communication, the physical hospital environment, care needs and ongoing management, and person-centred care. These findings aligned with those from project one, but also served to generate additional items which could be asked in a future survey. Project three demonstrated promising results pertaining to the content validity, test-retest reliability, and acceptability of the newly created ACSPES. This thesis work has increased our understanding and learnings about the experiences of those who have undergone cardiac surgery across Alberta. It has also resulted in the creation of the ACSPES; a tool which may be used to better capture the unique experiences of cardiac surgery patients. Data from the ACSPES may be used to measure PCC in this cohort and may be integrated with administrative and other patient-reported data for future learnings. Additional psychometric testing of the ACSPES is required.
- ItemOpen AccessPatient and Caregiver Experiences Living with Advanced Colorectal Cancer & Receiving Early Palliative Care in Alberta(2020-07-28) Ahmed, Sadia; Santana, Maria Jose; Sinnarajah, Aynharan; McGhan, Gwen E.Background: Palliative care is patient-centred care that improves the quality of life of patients and families facing challenges associated with life-threatening illness. In Alberta, most people who received palliative care received it late, impacting their quality of life. An early palliative care pathway that incorporates patient and caregiver experiences is needed to ensure that priorities of patients living with advanced cancer care are at the forefront of quality care. Overall aim: This study aims to understand patient and caregiver experiences of advanced colorectal cancer care and receiving early palliative care to inform development and refinement of an early palliative care pathway for patients with advanced colorectal cancer. Methods: This is a qualitative study that is embedded within a larger program of research on the implementation of the Palliative Care Early and Systematic (PaCES- a province-wide project aimed at developing and delivering an early and systematic palliative care pathway for advanced colorectal cancer patients and their caregivers in Alberta) intervention. We conducted telephone interviews with patients living with advanced colorectal cancer and family caregivers to understand their experiences before implementing the early palliative care pathway (standard cancer care) and after the implementation of the palliative care pathway. Patients and caregivers were recruited with the help of clinician-research team members in Calgary and Edmonton. Data was thematically analyzed using deductive, inductive, and iterative coding strategies. Findings: Gaps in standard oncology care included poor care coordination, misunderstanding of palliative care, confusion regarding role of family physician, and lack of advance care planning discussions. Four main themes shaped participants’ experience of early palliative care: care coordination, perception of palliative care, coping with advanced cancer, and patient and family engagement. Main differences before and after implementation of the care pathway were in care coordination and communication with and among healthcare providers, understanding of palliative care, involvement of the family physician, and advance care planning discussions. Conclusions: Early palliative care delivered by a specialist palliative care nurse can improve advanced cancer care. The early palliative care pathway seeks to implement a standardized pathway that can be implemented across Alberta (including urban and rural settings), to guide routine advanced cancer care.
- ItemOpen AccessA Study to Understand and Improve Sexual Activity after Acute Coronary Syndrome(2018-12-13) Boothby, Célina A.; Rabi, Doreen M.; Campbell, Tavis S.; Santana, Maria Jose; Norris, ColleenA major cardiovascular event, like acute coronary syndrome (ACS), can have an extensive and long-term impact on many aspects of a patient-partner relationship, including aspects of sexual activity (SA). Current clinical recommendations suggest that both patients and partners should receive SA support after an ACS episode. To this date, there has been little qualitative inquiry that engages both patient and partner perspectives on their opinions of by whom, where, and how, SA support should be provided post-ACS. The objectives of this thesis were to 1) characterize the experiences of re-engaging in SA post-ACS by patients and partners and to 2) determine if cardiac rehabilitation (CR) could be an acceptable and effective point of intervention for SA support post-ACS by patients and partners. A multi-methods study design was used to address both objectives through qualitative inquiry and a systematic review. The qualitative study provided supportive evidence of the importance of SA by patients and partners post-ACS, revealed that couples thought SA support was insufficient and articulated ways that education could be improved, and identified CR as a potential point of SA support. The systematic review revealed seven studies that reported a significant benefit in SA outcomes in the CR group, one study that reported significant harm, and eleven studies that reported a non-significant difference. This thesis suggests that there is room for improvement in terms of content and delivery of SA support to both patients and partners post-ACS, and that CR may be an appropriate place for such support.
- ItemOpen AccessThe Effects of Aerobic and Resistance Training on Health-Related Quality of Life in Individuals with Type 1 Diabetes: The T1-DARE and READI Trials(2018-10-26) Bastell, Kent Miles; Sigal, Ronald J.; Goldfield, Gary S.; Santana, Maria JoseExercise can improve physical and psychological outcomes in many chronic diseases. However, effects of exercise training on health-related quality of life (HRQOL) in people with type 1 diabetes (T1DM) patients are not well known. We aimed to determine the effects of exercise on HRQOL in T1DM by analyzing data from two distinct studies, with parallel methodologies. In the T1-DARE trial (n=66) we assessed the effects of aerobic (n=17), resistance (n=17), combined training (n=16) and a non-exercise control group (n=16) on HRQOL in previously sedentary individuals with T1DM. In the READI trial (n=131), we examined whether there was an additive effect of resistance training (n=71) on HRQOL in already-aerobically active individuals with T1DM versus a non-resistance trained control group (n=60). All participants in both studies completed a pre-randomization run-in period to allow for optimization of insulin regimens, and assessment of adherence. Additionally, all participants in both studies completed a generic (SF-36) and disease-specific (DSQOLS) HRQOL questionnaire at baseline, 3 months and 6 months. In the T1 DARE trial, there were significant within-group increases in the SF-36 “Energy/Fatigue” subscale for the aerobic (⍙=6.9, p=0.04), resistance (⍙=9.3, p<0.01), and combined group (⍙=7.1, p=0.04). Significant between-group differences in change were observed for the aerobic (⍙=9.9, p=0.04), resistance (⍙=12.4, p=0.01), and combined groups (⍙=10.1, p=0.04) versus the control at 3 months only. For the “Physical Functioning” subscale, the resistance group had significant within-group increases at 3 months (⍙=8.7, p<0.01) and 6 months (⍙=7.7, p=0.02). For the DSQOLS, where lower score are indicative of higher functioning, there were significant within-group improvements in “Total Score” for the aerobic group at 6 months (⍙=-6.5, p=0.02) and for the “Daily Hassles” subscale at 6 months for both the aerobic (⍙=-8.9, p<0.001) and resistance (⍙=-6.7, p=0.01) groups. The READI Trial found significant within-group increases from all exercise groups in the “General Health” subscale at both 3 months (⍙= 4.3 95% CI, 1.1, 7.4, p = 0.008) and 6 months [⍙= 5.2, 95% CI, 2.2, 8.2, p < 0.001); with significant between-group changes at 6 months (⍙= 4.6, 95% CI, 0.1, 9.1, p = 0.046).