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Assessing Fear of Cancer Recurrence among Adolescents and Young Adults: The Por...
Neves, Maria Carolina; Sales, Célia M. D.; Oliveira, Joana; Bártolo, Ana; Prins, Judith B.; Monteiro, SaraIntroduction: Adolescents and young adults with cancer experience high levels of fear of cancer recurrence (FCR), negatively impacting their lives. However, no measure has been validated worldwide to assess FCR levels among these young people. This study aims to validate the FCR7, a scale that measures FCR, for the Portuguese population of adolescents and young adults.Methods: Ninety-two participants were recru...
Taking care of an adolescent and young adult cancer survivor: a systematic revi...
Neves, Maria Carolina; Bártolo, Ana; Prins, Judith B.; Sales, Célia M. D.; Monteiro, SaraResearch usually investigates adolescents and young adults (AYA) with cancer in combination with younger and older cancer patients and survivors. However, AYAs with cancer are a unique group, and their caregivers' experience may also differ from other caregivers of cancer survivors. This systematic review aims to understand the impact of a cancer diagnosis on family caregivers, comparing the experience of careg...
Idiographic patient reported outcome measures (I‐PROMs) for routine outcome mon...
Sales, Célia M. D.; Ashworth, Mark; Ayis, Salma; Barkham, Michael; Edbrooke‐Childs, Julian; Faisca, Luis; Jacob, Jenna; Xu, Dan; Cooper, MickIdiographic patient-reported outcome measures (I-PROMs) are a growing set of individualized tools for use in routine outcome monitoring (ROM) in psychological therapies. This paper presents a position statement on their conceptualization, use, and analysis, based on contemporary evidence and clinical practice. Four problem-based, and seven goal-based, I-PROMs, with some evidence of psychometric evaluation and u...
Citizen Consultation on Problematic Usage of the Internet: Ethical Consideratio...
Gjoneska, Biljana; Jones, Julia; Vella, Anna Maria; Bonanno, Philip; Flora, Katerina; Fontalba-Navas, Andrés; Hall, Natalie; Ignjatova, LiljanaCitizens and scientists can work together to improve the collective well-being, if citizens are inspired to help the advancement of science, and researchers motivated to listen to the voices of citizens. The benefits of such collaboration are increasingly recognized by both citizens and scientists, as reflected in the growing number of related publications and initiatives. This is especially relevant for emergi...
Personalising outcome measurement in substance misuse treatment: the feasibilit...
Alves, Paula; Faisca, Luis; Sales, Célia M. D.; Ashworth, MarkIndividualised information in substance misuse treatment complements standardised outcome measures. However, few studies investigate the use of individualised measures and their robustness in terms of quantifying outcomes. In this study, we analysed the psychometrics and feasibility of two individualised outcome measures (PQ and PSYCHLOPS). We followed a cross-sectional methodology, administering the individual...
Capturing and missing the patient's story through outcome measures : a thematic...
Sales, Célia M. D.; Neves, Inês T. D.; Alves, Paula G.; Ashworth, MarkBackground: There is increasing interest in individualized patient-reported outcome measures (I-PROMS), where patients themselves indicate the specific problems they want to address in therapy and these problems are used as items within the outcome measurement tool. Objective: This paper examined the extent to which 279 items reported in an I-PROM (PSYCHLOPS) added qualitative information which was not captured...
Individualized Patient-Progress Systems: Why We Need to Move Towards a Personal...
Sales, Célia M. D.; Alves, Paula C. G.Patient-focused psychotherapy research refers to the monitoring, prediction, and evaluation of patient progress in therapy. This is traditionally based on repeated standardized measurement and followed by the provision of nomothetic feedback to both therapists and patients based on those measures. Patient progress throughout therapy can also use idiographic assessments, which involve using personalized instrume...