https://www.um.edu.mt/library/oar/handle/123456789/431 2026-04-04T12:41:51Z 2026-04-04T12:41:51Z Lykkeberg, Birgitte Christensen, Anne Vinggaard Berg, Selina Kikkenborg Larsen, Signe Holm van Bulck, Liesbet Goossens, Eva Kovac, Adrienne H. Luyckx, Koen Ladak, Laila Akbar Leye, Mohamed van De Bruaene, Alexander Leong, Ming Chern Kaneva, Anna Amaral, Fernando Araujo, John Jairo Sasikum, Navaneetha Gabriel, Harald Goshu, Dejuma Yadeta Wang, Jou-Kou Enomoto, Junko Areias, Maria Emília Kosmidis, Diamantis Coats, Louise Valente, Anne Marie Moon, Ju Ryoung Ladouceur, Magalie Thomet, Corina Jackson, Jamie L. Sandberg, Camilla Callus, Edward Kim, Yuli Y. Alday, Luis Bredy, Charlene Saidi, Arwa Reyes, Fernando Baraona Menahem, Samuel de Hosson, Michele Hlebowicz, Joanna Christersson, Christina Zaidi, Ali Johansson, Bengt Andresen, Brith Ambassa, Jean-Claude Mandalenakis, Zacharias Constantine, Andrew Amedro, Pascal van Melle, Joost P. Cedars, Ari Ortiz, Lucia Demir, Fatma Khairy, Paul Windram, Jonathan Bouchardy, Judith Caruana, Maryanne Jameson, Susan M. Mahadevan, Vaikom S. McGrath, Lidija B. Mwita, Julius Chacha Moons, Philip https://www.um.edu.mt/library/oar/handle/123456789/143679 2026-02-16T08:39:58Z 2026-01-01T00:00:00Z

Title: Person-centred care in congenital heart disease : intercountry variation in patient-reported experiences across 32 countries Authors: Lykkeberg, Birgitte; Christensen, Anne Vinggaard; Berg, Selina Kikkenborg; Larsen, Signe Holm; van Bulck, Liesbet; Goossens, Eva; Kovac, Adrienne H.; Luyckx, Koen; Ladak, Laila Akbar; Leye, Mohamed; van De Bruaene, Alexander; Leong, Ming Chern; Kaneva, Anna; Amaral, Fernando; Araujo, John Jairo; Sasikum, Navaneetha; Gabriel, Harald; Goshu, Dejuma Yadeta; Wang, Jou-Kou; Enomoto, Junko; Areias, Maria Emília; Kosmidis, Diamantis; Coats, Louise; Valente, Anne Marie; Moon, Ju Ryoung; Ladouceur, Magalie; Thomet, Corina; Jackson, Jamie L.; Sandberg, Camilla; Callus, Edward; Kim, Yuli Y.; Alday, Luis; Bredy, Charlene; Saidi, Arwa; Reyes, Fernando Baraona; Menahem, Samuel; de Hosson, Michele; Hlebowicz, Joanna; Christersson, Christina; Zaidi, Ali; Johansson, Bengt; Andresen, Brith; Ambassa, Jean-Claude; Mandalenakis, Zacharias; Constantine, Andrew; Amedro, Pascal; van Melle, Joost P.; Cedars, Ari; Ortiz, Lucia; Demir, Fatma; Khairy, Paul; Windram, Jonathan; Bouchardy, Judith; Caruana, Maryanne; Jameson, Susan M.; Mahadevan, Vaikom S.; McGrath, Lidija B.; Mwita, Julius Chacha; Moons, Philip Abstract: Introduction: Person-centred care (PCC) is widely recommended by the World Health Organisation and other leading healthcare organisations. Although individuals with congenital heart disease (CHD) require lifelong follow-up, it remains unclear whether healthcare systems worldwide provide PCC to this population. This study investigated one key component of PCC, autonomy support, using patient-reported experiences in a global sample of adults with CHD. Methods: The study was part of the international cross-sectional APPROACH-IS-II. Data were obtained from 8367 adults with congenital heart disease across 53 centres in 32 countries. Perceived autonomy support was measured using a modified version of the Health Care Climate Questionnaire. A general linear mixed model was used to analyse the data. Results: Autonomy support scores ranged from 27.9 (SD ± 9.4) to 37.7 (SD ± 6.3) on a six - 42 point scale. A significant clinical difference in perceived autonomy was observed, with calculated effect sizes using Cohen's D exceeding eight in several countries. Higher autonomy scores were associated with having a high school diploma and older age. Patient characteristics accounted for 1.4 % of the variance, while geographical location explained 7.5 %. A large proportion of the variance remained unexplained. Conclusion: This study highlights significant global differences in perceived autonomy support from healthcare providers among adults with CHD. Education and age were associated with higher levels of perceived autonomy support. The experience of PCC is challenged by diverse expectations of individuals and families, healthcare providers' beliefs and values, institutional policies, and broader sociocultural contexts.

2026-01-01T00:00:00Z van Bulck, Liesbet Goossens, Eva Kovacs, Adrienne H. Luyckx, Koen Ladak, Laila Akbar Leye, Mohamed van De Bruaene, Alexander Leong, Ming Chern Kaneva, Anna Pavão, Rafael Brolio Araujo, John Jairo Sasikumar, Navaneetha Gabriel, Harald Goshu, Dejuma Yadeta Lu, Chun-Wei Enomoto, Junko Areias, Maria Emília Kosmidis, Diamantis Coats, Louise Valente, Anne Marie Moon, Ju Ryoung Ladouceur, Magalie Thomet, Corina Jackson, Jamie L. Sandberg, Camilla Callus, Edward Kim, Yuli Y. Lykkeberg, Birgitte Alday, Luis Bredy, Charlene Saidi, Arwa Reyes, Fernando Baraona Menahem, Samuel Hosson, Michèle de Mandelenakis, Zacharias Christersson, Christina Zaidi, Ali Johansson, Bengt Andresen, Brith Ambassa, Jean-Claude Mattsson, Eva Constantine, Andrew Amedro, Pascal Melle, Joost P. van Cedars, Ari Ortiz, Lucia Demir, Fatma Khairy, Paul Windram, Jonathan Bouchardy, Judith Caruana, Maryanne Jameson, Susan M. Mahadevan, Vaikom S. McGrath, Lidija B. Mwita, Julius Chacha Moons, Philip https://www.um.edu.mt/library/oar/handle/123456789/143678 2026-02-16T08:33:03Z 2026-01-01T00:00:00Z

Title: Advance care planning in adults with congenital heart diseases : current practices, preferences, and needs of 8,281 adults from 32 countries Authors: van Bulck, Liesbet; Goossens, Eva; Kovacs, Adrienne H.; Luyckx, Koen; Ladak, Laila Akbar; Leye, Mohamed; van De Bruaene, Alexander; Leong, Ming Chern; Kaneva, Anna; Pavão, Rafael Brolio; Araujo, John Jairo; Sasikumar, Navaneetha; Gabriel, Harald; Goshu, Dejuma Yadeta; Lu, Chun-Wei; Enomoto, Junko; Areias, Maria Emília; Kosmidis, Diamantis; Coats, Louise; Valente, Anne Marie; Moon, Ju Ryoung; Ladouceur, Magalie; Thomet, Corina; Jackson, Jamie L.; Sandberg, Camilla; Callus, Edward; Kim, Yuli Y.; Lykkeberg, Birgitte; Alday, Luis; Bredy, Charlene; Saidi, Arwa; Reyes, Fernando Baraona; Menahem, Samuel; Hosson, Michèle de; Mandelenakis, Zacharias; Christersson, Christina; Zaidi, Ali; Johansson, Bengt; Andresen, Brith; Ambassa, Jean-Claude; Mattsson, Eva; Constantine, Andrew; Amedro, Pascal; Melle, Joost P. van; Cedars, Ari; Ortiz, Lucia; Demir, Fatma; Khairy, Paul; Windram, Jonathan; Bouchardy, Judith; Caruana, Maryanne; Jameson, Susan M.; Mahadevan, Vaikom S.; McGrath, Lidija B.; Mwita, Julius Chacha; Moons, Philip Abstract: Background: Adults with congenital heart disease (CHD) are at high risk of premature death, making advance care planning (ACP) crucial for aligning care with individual values and goals. Previous ACP research has focused primarily on the United States and Canada, highlighting the need for a global perspective. We aimed to describe the ACP practices, needs, and preferences of adults with CHD around the globe and to investigate associations with patient-related factors. Methods: This cross-sectional study, part of the APPROACH-IS II project, assessed ACP preferences, needs, and practices by means of patient-reported surveys. Overall, 8281 patients with CHD (median age 32 years; 54% women; 15% mild, 58% moderate, 27% complex CHD) from 53 centres in 32 countries, spanning 6 continents, were included. Results: More than one-half of participants (55%) reported speaking to their physician about how their health might be in the future and 9% had preferences being documented in a plan. According to 66% of patients, the best time to initiate ACP is early in the disease trajectory. Most patients indicated being relatively comfortable talking to their physician about their future health and about death. ACP varied widely across different countries, with the United States and Canada at the top of the class for most variables. Conclusions: When looking at global ACP practices, needs, and preferences, much room for improvement of ACP provision could be noticed. Also, a notable variation in ACP was observed worldwide. Clinical Trial Registration: NCT04902768. [excerpt]

2026-01-01T00:00:00Z Camilleri, Lianne Vassallo, Josanne Gruppetta, Mark https://www.um.edu.mt/library/oar/handle/123456789/143669 2026-02-13T14:12:56Z 2025-01-01T00:00:00Z

Title: Epidemiology, presentation and outcomes in pituitary apoplexy : a population-based study in Malta Authors: Camilleri, Lianne; Vassallo, Josanne; Gruppetta, Mark Abstract: Aims and objectives: To determine the prevalence, incidence, and outcomes of pituitary apoplexy patients presenting acutely in Malta.; Methodology: Twenty-nine patients presenting with pituitary apoplexy between 1980 and 2023 were retrospectively identified. The prevalence and incidence rates were calculated. The clinical presentation, endocrinological and radiological findings, and outcomes of all patients with pituitary apoplexy were analysed and compared between the two cohorts who were treated conservatively or with early surgical intervention, taking into consideration serum prolactin levels at diagnosis. The pituitary apoplexy score was applied retrospectively.; Results: Five of the 29 patients had a known pituitary adenoma. The prevalence for pituitary apoplexy was 4.61/100,000 individuals (NFPA 3.69/100,000; functional adenoma 0.92/100,000), and the overall SIR was 0.189/100,000/year (NFPA 0.144/100,000/year; functional adenoma 0.047/100,000/year). Prevalence rates and SIR were higher among males (prevalence 8.08/100,000 in males vs 0.78/100,000 in females). Ninety-two percent of the patients who presented with apoplexy were macroadenomas, while 8% were microadenomas. The median age for apoplexy was found to be 51 years (42–58); higher in the NFPA subtype, 55 (49.5–63) when compared to 43 (38.5–45.25) in the functional group. Visual field defects were more prevalent when baseline prolactin levels were less than 5 ng/mL, 68.75 vs 42.86% (P = 0.014). There was no difference in terms of endocrinological outcome at 3 or 12 months between the surgically and conservatively treated groups.; Conclusion: Through thorough case identification, this study provides both prevalence and incidence rates of pituitary apoplexy in a well-defined population in Malta. Clinical sequelae and various treatment modalities have been studied to better understand this rare condition.

2025-01-01T00:00:00Z Montebello, Annalisa Vella, Sandro Gruppetta, Mark Spagnol, Vince Fava, Stephen https://www.um.edu.mt/library/oar/handle/123456789/143648 2026-02-12T16:43:12Z 2025-01-01T00:00:00Z

Title: Factors predicting cure at one year after administration of radioactive iodine to patients with Graves' disease Authors: Montebello, Annalisa; Vella, Sandro; Gruppetta, Mark; Spagnol, Vince; Fava, Stephen Abstract: Objective: To investigate the determinants of cure after radioactive iodine (RAI), a treatment frequently used to treat Graves' thyrotoxicosis.; Materials and methods: We conducted a retrospective analysis of data from 160 consecutive patients with Graves' thyrotoxicosis who received 370MBq of iodine-131 (131I) at one centre between 2009 and 2018. Data included gender, age, cause of thyrotoxicosis, and number of RAI doses administered. Free thyroxine (fT4) and triiodothyronine (fT3) level at diagnosis, thyroid stimulating hormone (TSH), fT4 and fT3 levels on the day of RAI, and TSH, fT4 and fT3 at 3, 6, and 12-months post RAI treatment were reviewed. Cure was defined as achieving a euthyroid or hypothyroid state within one year of RAI administration.; Results: Eighty one percent of the total cohort achieved cure at one year. Sixty one point eight percent of patients developed hypothyroidism within one year necessitating lifelong thyroxine replacement. fT4 at diagnosis (P=0.02), fT3:fT4 ratio at diagnosis (P=0.05) and the ratio of fT4 at diagnosis to fT4 pre-RAI ratio (P=0.05) and fT4 pre-RAI (P=0.002) were independent variables associated with cure after one year.; Conclusion: Radioactive iodine is a highly effective treatment for Graves' thyrotoxicosis. It is more likely to be successful in patients with lower fT4 at diagnosis and pre-RAI.

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