Judy W Ammerlaan1, Harmieke van Os-Medendorp2, Nienke de Boer-Nijhof3, Bertha Maat4, Lieske Scholtus5, Aike A Kruize6, Johannes W J Bijlsma7, Rinie Geenen8. 1. University Medical Center Utrecht, Department Rheumatology and Clinical Immunology, HPN D02.244, P.O. Box 85500, 3508 GA Utrecht, The Netherlands. Electronic address: j.ammerlaan@umcutrecht.nl. 2. University Medical Hospital Utrecht, Department Dermatology and Allergology, HPN D02.244, P.O. Box 85500, 3508 GA Utrecht, The Netherlands. Electronic address: h.vanosmedendorp@umcutrecht.nl. 3. Dutch Arthritis Foundation, Unit Volunteer at Dutch Arthritis Foundation, P.O. Box 59091, 1040 KB Amsterdam, The Netherlands. Electronic address: n.deboer.nijhof@gmail.com. 4. Dutch Arthritis Foundation, Unit Volunteer at Dutch Arthritis Foundation, P.O. Box 59091, 1040 KB Amsterdam, The Netherlands. Electronic address: jacobs.maat@hccnet.nl. 5. University Medical Center Utrecht, Department Rheumatology and Clinical Immunology, HPN D02.244, P.O. Box 85500, 3508 GA Utrecht, The Netherlands. Electronic address: l.w.scholtus@umcutrecht.nl. 6. University Medical Center Utrecht, Department Rheumatology and Clinical Immunology, HPN F02.127, P.O. Box 85500, 3508 GA Utrecht, The Netherlands. Electronic address: a.kruize@umcutrecht.nl. 7. University Medical Center Utrecht, Department Rheumatology and Clinical Immunology, HPN F02.127, P.O. Box 85500, 3508 GA Utrecht, The Netherlands. Electronic address: j.w.j.bijlsma@umcutrecht.nl. 8. Utrecht University, Department of Psychology, P.O. Box 80140, 3508 GA Utrecht, The Netherlands. Electronic address: R.Geenen@uu.nl.
Abstract
OBJECTIVE: Aim of this study was to investigate preferences and needs regarding the structure and content of a person-centered online self-management support intervention for patients with a rheumatic disease. METHODS: A four step procedure, consisting of online focus group interviews, consensus meetings with patient representatives, card sorting task and hierarchical cluster analysis was used to identify the preferences and needs. RESULTS: Preferences concerning the structure involved 1) suitability to individual needs and questions, 2) fit to the life stage 3) creating the opportunity to share experiences, be in contact with others, 4) have an expert patient as trainer, 5) allow for doing the training at one's own pace and 6) offer a brief intervention. Hierarchical cluster analysis of 55 content needs comprised eleven clusters: 1) treatment knowledge, 2) societal procedures, 3) physical activity, 4) psychological distress, 5) self-efficacy, 6) provider, 7) fluctuations, 8) dealing with rheumatic disease, 9) communication, 10) intimate relationship, and 11) having children. CONCLUSION: A comprehensive assessment of preferences and needs in patients with a rheumatic disease is expected to contribute to motivation, adherence to and outcome of self-management-support programs. PRACTICE IMPLICATIONS: The overview of preferences and needs can be used to build an online-line self-management intervention.
OBJECTIVE: Aim of this study was to investigate preferences and needs regarding the structure and content of a person-centered online self-management support intervention for patients with a rheumatic disease. METHODS: A four step procedure, consisting of online focus group interviews, consensus meetings with patient representatives, card sorting task and hierarchical cluster analysis was used to identify the preferences and needs. RESULTS: Preferences concerning the structure involved 1) suitability to individual needs and questions, 2) fit to the life stage 3) creating the opportunity to share experiences, be in contact with others, 4) have an expert patient as trainer, 5) allow for doing the training at one's own pace and 6) offer a brief intervention. Hierarchical cluster analysis of 55 content needs comprised eleven clusters: 1) treatment knowledge, 2) societal procedures, 3) physical activity, 4) psychological distress, 5) self-efficacy, 6) provider, 7) fluctuations, 8) dealing with rheumatic disease, 9) communication, 10) intimate relationship, and 11) having children. CONCLUSION: A comprehensive assessment of preferences and needs in patients with a rheumatic disease is expected to contribute to motivation, adherence to and outcome of self-management-support programs. PRACTICE IMPLICATIONS: The overview of preferences and needs can be used to build an online-line self-management intervention.
Authors: Marieke van der Gaag; Monique Heijmans; Marta Ballester; Carola Orrego; Ena Niño de Guzmán; Lyudmil Ninov; Jany Rademakers Journal: Front Public Health Date: 2022-05-11
Authors: Nevena Rebić; Ria Garg; Ursula Ellis; Vanessa Kitchin; Sarah Munro; Glen Hazlewood; Neda Amiri; Nick Bansback; Mary A De Vera Journal: Arthritis Res Ther Date: 2021-04-21 Impact factor: 5.156