QOLP-12. ILLNESS UNDERSTANDING AND PERCEPTIONS ABOUT PROGNOSIS IN PATIENTS WITH MALIGNANT GLIOMAS AND THEIR CAREGIVERS

BACKGROUND Malignant gliomas (MG) are incurable tumors with limited survival. Prognostic awareness is essential for informed decision making, but patients’ and caregivers’ perceptions about their illness and prognosis are not well understood. METHODS We conducted a prospective, single-institution study in patients with newly diagnosed MG and their caregivers, following the outpatient visit in which their neuro-oncologist disclosed pathology results and discussed treatment options. Participants (patients and caregivers) completed the Prognosis and Treatment Perceptions Questionnaire to assess information preferences, treatment goals and prognostic understanding. RESULTS Of patients approached, 82% (14/17) were eligible and enrolled in the study. The majority of patients were male (9/14, 64%), median age 60 years (range 26-76) and had a glioblastoma (11/14, 79%). Most caregivers were female (8/11, 73%) and married to the patient (7/11, 64%). The majority of patients said their cancer was curable (10/13, 77%, one patient did not answer), while only 3/11 caregivers (27%) said the patient’s cancer was curable. Furthermore, 7/13 patients (54%) and 8/11 caregivers (73%) reported that their oncologist said their cancer was not curable, and the remainder (6/13 patients, 46% and 3/11 caregivers, 27%) said the oncologist “did not say” whether it was curable. Most patients (10/14, 71%) and caregivers (8/11, 73%) expressed a tendency to focus on the best-case scenario in response to information from their oncology team about their cancer. CONCLUSION Although most patients with MG and their caregivers acknowledged being told that their cancer was incurable, the majority of patients reported that their cancer was curable. Patients and caregivers often reported focusing on the best-case scenario regarding their cancer. Further investigation is warranted to explore strategies to support patients and caregivers learning about their incurable cancer.

Quantitative and Qualitative Strategies to Strengthen Internal Validity in Randomized Trials

Although the randomized controlled trial (RCT) is the most reliable design to infer causality, evidence suggests that it is vulnerable to biases that weaken internal validity. In this paper, we review factors that introduce biases in RCTs and we propose quantitative and qualitative strategies for colleting relevant data to strengthen internal validity. The factors are related to participants’ reactions to randomization, attrition, treatment perceptions, and implementation of the intervention. The way in which these factors operate is explained and pertinent empirical evidence is synthesized. Quantitative and qualitative strategies are described. Researchers can plan to assess these factors and examine their influence, providing evidence of what actually contributed to the interventions’ causal impact.

Maternal perception of breastfeeding in children with unilateral cleft lip and palate: a qualitative research work

BackgroundUnilateral cleft lip and / or palate (UCLP) is one of the most common congenital craniofacial abnormalities. The objective of this study was to describe maternal perception of breastfeeding in children with unilateral cleft lip and palate and to assess the role of breastfeeding counseling. MethodsQualitative descriptive method and phenomenological analysis were used to analyze the narratives. 28 mothers of patients with nonsyndromic UCLP treated with Nasoalveolar molding (NAM) between April 2015 and April 2017 were strategically selected and interviewed. Framework analysis was conducted for qualitative data. The CES University ethical committee approved the study. ResultsThe findings resulted in six main categories. First, contact with the CLP program, access to early diagnosis and timely treatment, perceptions of parents about health personnel on breastfeeding of CLP patients, perceptions of mothers toward breastfeeding, perception of advantages and disadvantages of the NAM technique regarding breastfeeding and assessment of the CLP program. ConclusionThe participants related difficulties with breastfeeding. Mothers acknowledged the clinical results when using the NAM obturator, as well as the support provided by the breastfeeding consultant.

Perceptions of prognosis and goal of treatment in patients with malignant gliomas and their caregivers

Background Patients with malignant gliomas have a poor prognosis. However, little is known about patients’ and caregivers’ understanding of the prognosis and the primary treatment goal. Methods We conducted a prospective study in patients with newly diagnosed malignant gliomas (N = 72) and their caregivers (N = 55). At 12 weeks after diagnosis, we administered the Prognosis and Treatment Perceptions Questionnaire to assess understanding of prognosis and the Hospital Anxiety and Depression Scale to evaluate mood. We used multivariable regression analyses to explore associations between prognostic understanding and mood and McNemar tests to compare prognostic perceptions among patient-caregiver dyads (N = 48). Results A total of 87.1% (61/70) of patients and 79.6% (43/54) of caregivers reported that it was “very” or “extremely” important to know about the patient’s prognosis. The majority of patients (72.7%, [48/66]) reported that their cancer was curable. Patients who reported that their illness was incurable had greater depressive symptoms (B = 3.01, 95% CI, 0.89-5.14, P = .01). There was no association between caregivers’ prognostic understanding and mood. Among patient-caregiver dyads, patients were more likely than caregivers to report that their primary treatment goal was cure (43.8% [21/48] vs 25.0% [12/48], P = .04) and that the oncologist’s primary goal was cure (29.2% [14/48] vs 8.3% [4/48], P = .02). Conclusions Patients with malignant gliomas frequently hold inaccurate perceptions of the prognosis and treatment goal. Although caregivers more often report an accurate assessment of these metrics, many still report an overly optimistic perception of prognosis. Interventions are needed to enhance prognostic communication and to help patients cope with the associated distress.

Treatment Expectations, Convenience, and Satisfaction with Anticoagulant Treatment: Perceptions of Patients in South-East Queensland, Australia

Background: Warfarin has long been the only oral anticoagulant (OAC) available, but options now include non-vitamin K antagonists. Prescribing an OAC may be influenced by patient factors and preferences influenced by dosing, monitoring, and adverse effects, which may ultimately impact patient satisfaction and convenience. The aim of this study was to explore the perception of OAC treatment by Australian patients in terms of treatment expectations, convenience, and satisfaction. Methods: The Perception of Anticoagulant Treatment Questionnaire was distributed to patients dispensed OAC medication from three pharmacies in South-East Queensland. Responses to questions using a five-point Likert scale were collated and mean results utilised to assess expectations, convenience, and satisfaction, including an analysis across demographic groups. Results: A total of 56 (26.8%) surveys were returned, with the majority of respondent’s male (58.2%). Highest mean scores for treatment expectation were for an OAC that was easy to take (4.85 ± 0.79) and that could be taken care of by the respondents themselves (4.11 ± 1.14). The mean overall score for convenience was 68.90 ± 11.44% and for satisfaction 69.43 ± 16.58%. Significantly higher mean convenience scores were found in females and patients with atrial fibrillation. Conclusions: Patients’ highest expectations were for an OAC that would be easy to take, and overall satisfaction and convenience was around 69%. Factors including demographics can influence perceptions of therapy, and addressing individual preferences for OAC therapy may increase ratings of satisfaction and convenience.

Illness and treatment perceptions of patients with epilepsy attending their treatment at tertiary hospital in Addis Ababa, Ethiopia–a qualitative exploration

Background Epilepsy can be a large economic burden in countries where appropriate treatment is not taken due to religious and psychosocial beliefs. Objective To explore the perceptions and experiences of patients with epilepsy attending their treatment at Tikur Anebessa Specialized Hospital about their illness and treatment. Methods A qualitative exploratory design with an in-depth interview with fourteen purposively selected patients was used until saturation of key emerging themes was achieved. Result The finding showed that study participants experienced delay in treatment-seeking and non-adherence to recommended treatment regimens and as well use of traditional medicine and spiritual healing. Some of the possible reasons for their reported behaviors include alternative perceptions that they have about their illness, social and psychological issues that they face, concerns about their medications alongside with dissatisfaction with their healthcare providers. On the other hand, reasons that were reported to positively influence their treatment experiences include necessity perceptions about their medications, family support and use of spiritual healing alongside their biomedical treatment. Conclusion The healthcare provision should improve to cater to these groups of patients including instituting chronic care management and appropriate health education provision.