Many sexual health programs transitioned to virtual implementation during the COVID-19 pandemic. Despite its devastation, the pandemic provided an opportunity to learn about virtual compared to in-person implementation of a sexual health promotion program—El Camino. This study assessed differences in program attendance, engagement, quality, and student ratings for virtual versus in-person implementation of El Camino as part of a rigorous evaluation in high schools with high Latino populations in Maryland. Drawing on positive youth development practices, El Camino helps participants identify personal goals and learn about sexual reproductive health and healthy relationships. This mixed-methods study incorporates data from performance measures, baseline and post-intervention participant surveys, observations, monthly implementation reports, and debriefs with facilitators to describe and compare virtual and in-person program implementation. At baseline, participants were an average of 16.2 years old; between 8 and 12th grade; 61% female; 79% Hispanic, Latino, or of Spanish origin; and 54% spoke mostly Spanish at home. Recruitment and retention of students outside of school classes were challenging for both forms of implementation. However, attendance was higher during in-person implementation and in schools where the organization implementing El Camino had a strong presence before the pandemic. Findings indicate high fidelity, excellent quality ratings, and positive student perceptions of the program and facilitators in both the virtual and in-person cohorts, which suggest that both forms of implementation were comparable and furthermore highlight the strength of the virtual adaptation of the El Camino program.
Objective. (1) Examine QoL of caregivers of patients with brain tumours compared to population norms and other cancer caregiver groups, (2) appraise the content of quantitative QoL outcome measures utilised, and (3) assess to what extent QoL measures used in research align with caregivers’ priorities. Methods. Systematic literature search of studies including caregivers of brain tumour patients using self-completed assessments of QoL. Extracted data from included studies included quantitative QoL outcome data, QoL outcome measures utilised, and the included QoL domains. The impact of brain tumour patient caregiving was assessed by summarising included data comparing brain tumour caregivers to other cancer caregivers and normative population data. QoL measures utilised by the studies and their domains were extracted, coded, and analysed by themes. The rates of investigation by theme were then compared to existing data on caregiver-own preference in relation to QoL. Results. 49 studies, including 57 outcome measures, incorporating a combined 124 QoL domains. Brain tumour caregivers reported lower QoL outcomes than population norms but similar to other cancer caregiver groups. Thematic analysis of QoL domains generated 7 themes: caregiving burden and adaptation, existential and self, family and social support, finances, information needs, physical symptoms and functioning, and psychological symptoms and wellbeing. The most investigated themes were physical and psychological symptoms, the most important for caregivers themselves were family and social support. Conclusions. Caregiving for brain tumour patients is shown to negatively affect QoL, particularly mental health, burden, and social life. Existing QoL research in caregivers of brain tumour patients predominantly utilises generic QoL measures designed for use in patients and draws a medicalised view of QoL priorities. The few studies using caregiver-specific QoL measures demonstrated closer alignment to caregiver preferences such as family and social support.
AIMS CaPaBLE tests the feasibility and acceptability of assessing quality of life (QoL) using the patient-, or caregiver-generated index (PGI/CaGI) methodology in patients with HGG and their caregivers. METHOD CaPaBLE, (https://www.isrctn.com/ISRCTN45555598), followed patients and/or their caregivers up to 6 months. Standard measures for patients were EORTC QLQ-C30/BN20, for caregivers the CarGOQOL questionnaire. The QoL topics raised through PGI/CaGI have been coded to the most relevant domain from their respective standard measure for an initial assessment of concordance. RESULTS 36 patients, 24 caregivers recruited to study; completing an average of 3 study assessment timepoints. PGI and CaGI generated 240 and 160 topics respectively. Patient concerns most frequently coded to EORTC domain of Role Functioning; Caregiver concerns mostly coded to CarGOQOL domain of Burden. Other topics frequently raised by patients such as the driving and sex life, and future planning by caregivers are not specifically raised in standard questionnaires. CONCLUSION Nearly all topics raised by patients and caregivers were mapped to the domains of their respective standard QoL measure. However, almost half of all topics raised by patients and caregivers mapped to a minority of the domains included in standard measures; whilst a notable number of topics are not specifically included in standard measures at all. This raises questions regarding the efficiency and relevance of such questionnaires to patient and caregivers’ daily lives.
Background CaPaBLE tests the feasibility and acceptability of assessing quality of life (QoL) using the patient-, or caregiver-generated index (PGI/CaGI) methodology in patients with HGG and their caregivers. Material and Methods CaPaBLE, (https://www.isrctn.com/ISRCTN45555598), followed patients and/ or their caregivers up to 6 months. Standard measures for patients were EORTC QLQ-C30/BN20, for caregivers the CarGOQOL questionnaire. The QoL topics raised through PGI/CaGI have been coded to the most relevant domain from their respective standard measure for an initial assessment of concordance. Results 36 patients, 24 caregivers recruited to study; completing an average of 3 study assessment timepoints. PGI and CaGI generated 240 and 160 topics respectively. Patient concerns most frequently coded to EORTC domain of Role Functioning; Caregiver concerns mostly coded to CarGOQOL domain of Burden. Other topics frequently raised by patients such as the driving and sex life, and future planning by caregivers are not specifically raised in standard questionnaires. Conclusion Nearly all topics raised by patients and caregivers were mapped to the domains of their respective standard QoL measure. However, almost half of all topics raised by patients and caregivers mapped to a minority of the domains included in standard measures; whilst a notable number of topics are not specifically included in standard measures at all. This raises questions regarding the efficiency and relevance of such questionnaires to patient and caregivers’ daily lives.
Aims High grade gliomas are rare but have the highest number of cancer deaths in the under-40s. Treatment options are limited, resulting in a clinical focus on maintaining quality of life (QoL). However standard QoL assessment tools are time consuming, may not reflect an individual’s priorities, and are rarely used in clinical practice. Moreover, the impact of caring for someone with a high grade glioma is seldom assessed. An alternative approach to assessing quality of life is to use a patient - or carer-generated index (PGI/CaGI), which asks patients & carers to raise, rank and number their concerns. This may offer a route to individualised QoL assessments within clinical and research settings. The CaPaBLE study tests the feasibility and acceptability of the PGI and CaGI methodology in patients with high-grade glioma and their caregivers. This paper highlights key similarities and differences of the PGI/CaGI to standard QoL questionnaires. Method CaPABLE is an observational phase 2 non-randomised study following patients and their caregivers over 6 months starting at either first diagnosis or recurrence (https://www.isrctn.com/ISRCTN45555598). Patients and caregivers complete both standard questionnaires (EORTC QLQ C30 & BN20 and CargoQOL) and PGI/CAGI at 5 timepoints over the 6 month period. Each time the patients/caregivers complete the PGI/CAGI they are asked to identify up to 5 main topics of concern for their QoL, to score these, and rank their importance. For this analysis, we grouped topics into themes, compared the stability of themes over time and to EORTC domains. Analyses of EORTC measures are conducted using standard scoring approaches. Here we present an initial analysis of occurrence of PGI/CaGI themes compared to EORTC domains, but do not consider scores or ranking. Results 6 patients (4 male) and 5 caregivers (3 female; 4 paired with patients; one unpaired) have completed both standard questionnaire and PGI/CaGI at three or more time points, with a total of 19 (patient) and 18 (caregiver) assessments. On average people reported 3 topics at each assessment. The PGI generated 59 topics (32 themes); the CaGI, 50 topics (23 themes) and themes were consistent over time. The most common domain raised by patients was “social life” (13). Caregivers raised “personal life and family” (12 and “planning ahead” (7) more commonly. Of the 32 PGI themes, 23 align with EORTC domains. 9 PGI themes were not represented in the EORTC questionnaires, and 14 EORTC domains did not appear in the PGI. Of the 23 CaGI themes, 17 align with 7 CarGOQOL domains. 6 CaGI themes were not represented in the CarGOQOL and 3 CarGOQOL domains did not appear in the CaGI. Conclusion PGI and CaGI themes coincide with the main domains of EORTC (i.e., cognitive, social, role, physical, emotional functioning, future uncertainty). However, there were significant discrepancies: PGI (e.g., intimacy, ability to drive, and COVID related restrictions) and CaGI (e.g. personal life & family) highlighted themes that are not in the standard questionnaires. Both PGI/CaGI and standard questionnaires agree that symptom-related issues such as pain and seizures are not the main priority when it comes to QoL. In addition, CarGOQOL reports positive aspects of care, whereas CaGI only raised negative areas. This study is the first to show the feasibility of PGI/CaGI in a brain tumour patient & caregiver population. PGI/CaGI are notably quicker to complete and provide insights not captured by standard questionnaires. We are continuing to recruit patients and caregivers, and have submitted a protocol amendment to carry out qualitative interviews with patients and caregivers, to explore their views further.
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