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1.
Scand J Gastroenterol ; 57(11): 1312-1320, 2022 11.
Article in English | MEDLINE | ID: mdl-35722732

ABSTRACT

BACKGROUND AND OBJECTIVE: Anti-TNFs have been shown to significantly improve the health-related quality of life (HRQoL) in Crohn's disease (CD) patients. The purpose of this study was to investigate to what extend the patients' preferences for these intravenous (IV) and subcutaneous (SC) treatments differ based on respondents' quality of life. An online discrete choice experiment (DCE) was conducted to understand patient trade-offs in treatment choice. METHODS: Fifty-seven Crohn's disease anti-TNF naïve patients were asked to choose between two different scenarios, considering the following attributes: mode of administration (MODE), total availability for injection (TIME), speed of onset (DELAY), risk of anti-TNF administration despite a contraindication (RISK) and total monthly out-of-pocket expenses (COST). At the same time, patients completed the IBDQ-32 questionnaire. Conditional logit models without and with interaction terms were estimated to evaluate attribute weights. RESULTS: Patients preferred to self-administer SC anti-TNF rather than have a primary care nurse do it, whereas the preference for IV route was negative. After adding interaction terms however, the IV route became preferred for patients with impaired HRQoL, this preference having decreased as HRQoL increased. Surprisingly, patients with impaired HRQoL were less willing to spend more time on treatment, and this effect diminished as HRQoL (overall and in each dimension) became higher. CONCLUSIONS: HRQoL level changed patients' preferences for the anti-TNF treatment. The results suggest the need to optimise the management of IV infusions in the hospital and reinforce the importance of patient-reported outcome measures (PROMS) as a common practice to improve shared medical decision making.


Subject(s)
Crohn Disease , Humans , Crohn Disease/drug therapy , Patient Preference , Quality of Life , Tumor Necrosis Factor Inhibitors , Surveys and Questionnaires , Choice Behavior
2.
Scand J Gastroenterol ; 57(5): 566-573, 2022 05.
Article in English | MEDLINE | ID: mdl-35188859

ABSTRACT

BACKGROUND AND AIMS: In Crohn's disease (CD), a composite therapeutic target was recently recommended, including both objective measurement (endoscopic remission) and Patient-Reported Outcomes (resolution of abdominal pain and normalization of bowel function). All dimensions of health-related quality of life (HRQoL) are impacted: not only bowel symptoms but also systemic symptoms, emotional wellbeing and social function. Thus, understanding the predictors of each HRQoL dimension would improve patient management. However, analysis of these factors has only been found in a few publications, with some limitations. Therefore, this study aimed to explore the evolution of the HRQoL of CD patients during six months after initiation of anti-TNF and to identify its predictors. METHODS: We analyzed data of 56 patients included in a multicenter prospective cohort study (COQC-PIT). HRQoL measures (using IBDQ-32) and data related to patient, disease and treatment characteristics were collected every two months. Generalized estimating equations were used. RESULTS: Overall HRQoL was significantly improved 2 months after anti-TNF initiation, and then stagnated. Patient, disease, and treatment characteristics have differentiated impacts on the overall score and on each dimension of quality of life. Subcutaneous anti-TNF had no significant effect on overall HRQoL, improving only emotional function and bowel symptoms. Concomitant use of corticosteroids and/or immunomodulators impaired almost all dimensions. Having children or working altered bowel symptoms. Disease duration and active smoking negatively impact emotional function and systemic symptoms. CONCLUSIONS: Each HRQoL dimension, not only bowel symptoms, and their influencing factors should therefore be considered in medical decision-making, especially in months following the initiation of a new treatment such as anti-TNF.


Subject(s)
Crohn Disease , Child , Crohn Disease/drug therapy , Crohn Disease/psychology , Humans , Prospective Studies , Quality of Life , Tumor Necrosis Factor Inhibitors
3.
BMC Health Serv Res ; 21(1): 958, 2021 Sep 13.
Article in English | MEDLINE | ID: mdl-34511115

ABSTRACT

BACKGROUND: Online communities for patients with chronic conditions are becoming healthcare providers. They gather to offer support and services, and to become a collective oppositional force. We found, however, that these communities and their collective power are rarely studied in the health services management literature, which focuses more on the empowering practices of healthcare professionals or patient participation. The aim of this study is thus to build a better understanding of the nature of patients' collective empowerment and the processes underlying it. We carry out two exploratory qualitative studies to examine the motivations that drive chronically ill patients to engage in an individual and then collective empowerment process. METHODS: The first qualitative study involves four semi-structured interviews with experts. The second is a netnographic study carried out over a year on an online forum for people with thyroid disease. The latter has two phases: an immersion phase followed by one that traces the path of 21 forum members from their first message to their recognition as active members or even forum moderators. The data are analyzed through thematic and lexical content analyses. RESULTS: We were able to identify the different stages of the collective patient empowerment process and the criteria for progression though this process. Specifically, the first study sheds light on the unmet individual and collective needs of the patients. The second emphasizes the essential role of active contributors and their impact on the growth and power of the community. CONCLUSIONS: This study looks at patient communities as a self-contained system and identifies the stages of collective empowerment that match the organization's declared priorities: community, collaborative, productive, and societal. These results should help health professionals better take these online communities into account in patient care, improving their practices, and carrying out their policies. We call for future research into collective empowerment and its influence on patient behavior, the transformation of healthcare institutions, and the health services market.


Subject(s)
Empowerment , Patient Participation , Health Personnel , Health Services , Humans , Qualitative Research
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