OBJECTIVE: Assessment of systemic sclerosis patients has not directly addressed functioning from the patient's perspective. With this study, we aim to gain our patient's point of view by using a questionnaire to describe their unmet needs and understanding what demographic parameters influence these. METHODS: A computer randomization program selected 50 patients, from 242 systemic sclerosis patients actively followed at our rheumatology clinic, to receive a survey about unmet needs. Twenty-five patients responded to the survey. Of 81 questions, 9 provided demographic data, whereas 72 questions addressed physical, daily living, psychologic, spiritual, existential, health services, health information, social support, and employment issues. A 4-point scale from no need to high need was used to rate all questions. Significant need was considered any issue for which more than 50% of patients reported a high need. The Fisher exact test was used to compare different demographic variables to unmet patient needs. RESULTS: The psychologic/spiritual/existential category had 9 questions reaching significance, the health services category had 5 significant questions, the physical category had 4 significant questions. Patients who had not attended college were more likely to have higher needs than patients who completed a college degree. Unmarried patients reported higher needs in 8 measures as compared with married patients, and patients in rural areas had higher needs in social support needs. CONCLUSIONS: The greatest prevalence of unmet needs in scleroderma patients were in the psychologic/spiritual/existential domain, such as being unable to do things they used to do, fear that the disease will worsen, anxiety and stress, feeling down or depressed, fears of physical disability, uncertainty about the future, change in appearance, keeping a positive outlook, and feeling in control. Significant differences were observed in unmet needs based on education, marital status, location, knowledge of disease, and age. Understanding each patient's specific unmet needs either through direct questioning or by the use of a questionnaire such as the one used for this study can help clinicians to give better care to each of our patients.
OBJECTIVE: Assessment of systemic sclerosispatients has not directly addressed functioning from the patient's perspective. With this study, we aim to gain our patient's point of view by using a questionnaire to describe their unmet needs and understanding what demographic parameters influence these. METHODS: A computer randomization program selected 50 patients, from 242 systemic sclerosispatients actively followed at our rheumatology clinic, to receive a survey about unmet needs. Twenty-five patients responded to the survey. Of 81 questions, 9 provided demographic data, whereas 72 questions addressed physical, daily living, psychologic, spiritual, existential, health services, health information, social support, and employment issues. A 4-point scale from no need to high need was used to rate all questions. Significant need was considered any issue for which more than 50% of patients reported a high need. The Fisher exact test was used to compare different demographic variables to unmet patient needs. RESULTS: The psychologic/spiritual/existential category had 9 questions reaching significance, the health services category had 5 significant questions, the physical category had 4 significant questions. Patients who had not attended college were more likely to have higher needs than patients who completed a college degree. Unmarried patients reported higher needs in 8 measures as compared with married patients, and patients in rural areas had higher needs in social support needs. CONCLUSIONS: The greatest prevalence of unmet needs in sclerodermapatients were in the psychologic/spiritual/existential domain, such as being unable to do things they used to do, fear that the disease will worsen, anxiety and stress, feeling down or depressed, fears of physical disability, uncertainty about the future, change in appearance, keeping a positive outlook, and feeling in control. Significant differences were observed in unmet needs based on education, marital status, location, knowledge of disease, and age. Understanding each patient's specific unmet needs either through direct questioning or by the use of a questionnaire such as the one used for this study can help clinicians to give better care to each of our patients.
Authors: Linda Kwakkenbos; Linda M Willems; Frank H J van den Hoogen; Wim G J M van Lankveld; Hanneke Beenackers; Toon F van Helmond; Eni S Becker; Cornelia H M van den Ende Journal: J Clin Psychol Med Settings Date: 2014-12
Authors: Lesley Ann Saketkoo; Tracy Frech; Cecília Varjú; Robyn Domsic; Jessica Farrell; Jessica K Gordon; Carina Mihai; Nora Sandorfi; Lee Shapiro; Janet Poole; Elizabeth R Volkmann; Monika Lammi; Kendra McAnally; Helene Alexanderson; Henrik Pettersson; Faye Hant; Masataka Kuwana; Ami A Shah; Vanessa Smith; Vivien Hsu; Otylia Kowal-Bielecka; Shervin Assassi; Maurizio Cutolo; Cristiane Kayser; Victoria K Shanmugam; Madelon C Vonk; Kim Fligelstone; Nancy Baldwin; Kerri Connolly; Anneliese Ronnow; Beata Toth; Maureen Suave; Sue Farrington; Elana J Bernstein; Leslie J Crofford; László Czirják; Kelly Jensen; Monique Hinchclif; Marie Hudson; Matthew R Lammi; Jennifer Mansour; Nadia D Morgan; Fabian Mendoza; Mandana Nikpour; John Pauling; Gabriela Riemekasten; Anne-Marie Russell; Mary Beth Scholand; Elise Seigart; Tatiana Sofia Rodriguez-Reyna; Laura Hummers; Ulrich Walker; Virginia Steen Journal: Best Pract Res Clin Rheumatol Date: 2021-09-15 Impact factor: 4.991
Authors: Hideyuki Ujiie; David Rosmarin; Michael P Schön; Sonja Ständer; Katharina Boch; Martin Metz; Marcus Maurer; Diamant Thaci; Enno Schmidt; Connor Cole; Kyle T Amber; Dario Didona; Michael Hertl; Andreas Recke; Hanna Graßhoff; Alexander Hackel; Anja Schumann; Gabriela Riemekasten; Katja Bieber; Gant Sprow; Joshua Dan; Detlef Zillikens; Tanya Sezin; Angela M Christiano; Kerstin Wolk; Robert Sabat; Khalaf Kridin; Victoria P Werth; Ralf J Ludwig Journal: Front Med (Lausanne) Date: 2022-06-09
Authors: Jessica Meijs; Elisabeth J M Zirkzee; Anne A Schouffoer; Stella M Henquet; Monique A A Caljouw; Theo Stijnen; Tom W J Huizinga; Annemie J M Schuerwegh; Theodora P M Vliet Vlieland Journal: Clin Rheumatol Date: 2013-08-28 Impact factor: 2.980
Authors: Anne A Schouffoer; Elisabeth J M Zirkzee; Stella M Henquet; Monique A A Caljouw; Gerda M Steup-Beekman; Jacob M van Laar; Theodora P M Vliet Vlieland Journal: Clin Rheumatol Date: 2011-01-18 Impact factor: 2.980
Authors: Julia Spierings; Cornelia H M van den Ende; Rita M Schriemer; Hein J Bernelot Moens; Egon A van der Bijl; Femke Bonte-Mineur; Marieke P D de Buck; Meeke A E de Kanter; Hanneke K A Knaapen-Hans; Jacob M van Laar; Udo D J Mulder; Judith Potjewijd; Lian A J de Pundert; Thea H M Schoonbrood; Anne A Schouffoer; Alja J Stel; Ward Vercoutere; Alexandre E Voskuyl; Jeska K de Vries-Bouwstra; Madelon C Vonk Journal: Rheumatology (Oxford) Date: 2020-06-01 Impact factor: 7.580