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1.
Palliat Med ; 37(5): 760-770, 2023 05.
Article in English | MEDLINE | ID: mdl-36856258

ABSTRACT

BACKGROUND: The Integrated Palliative Care Outcome Scale (IPOS) validly and reliably measures symptoms and concerns of those receiving palliative care. AIM: To determine the equivalence of the paper version with an electronic version of the IPOS (eIPOS). DESIGN: Multicentre randomised crossover trial (NCT03879668) with a within-subject comparison of the two modes (washout period 30 min). SETTING/PARTICIPANTS: Convenience sample of specialist inpatient and palliative home care patients aged over 18 years with cancer and non-cancer conditions was recruited. Scores were compared using intraclass correlation coefficients (ICC), Bland-Altman plots and via a mixed-effects analysis of variance. RESULTS: Fifty patients were randomised to complete paper-electronic (n = 24) and electronic-paper (n = 26) IPOS with median age 69 years (range 24-95), 56% male, 16% non-cancer. The ICCs showed very high concordance for the total score (ICC 0.99, 95% CI 0.98-1.00), lowest ICCs being observed for symptoms 'Appetite loss' and 'Drowsiness' (ICC 0.95, 95% CI 0.92-0.97). Nine of seventeen items had ICCs above 0.98, as did all subscales. No statistically significant mode, order, age, and interaction effects were observed for IPOS total score and subscales, except for 'Communication' (Fmode = 5.9, p = 0.019). Fifty-eight percent preferred the electronic version. In the group 75+ years, 53% preferred the paper version. Only three entries in the free-text main problems differed between the versions. CONCLUSION: The very high equivalence in scores and free text between the IPOS and the eIPOS demonstrates that eIPOS is feasible and reliable in an older palliative population.


Subject(s)
Hospice and Palliative Care Nursing , Palliative Care , Humans , Male , Adult , Middle Aged , Young Adult , Aged , Aged, 80 and over , Female , Cross-Over Studies , Reproducibility of Results , Quality of Life , Surveys and Questionnaires
3.
Int Wound J ; 19(7): 1686-1692, 2022 Nov.
Article in English | MEDLINE | ID: mdl-35128802

ABSTRACT

The COVID-19 pandemic caused collateral damage to patients with acute and chronic conditions. In this mono-centre cross-sectional study, we sought to evaluate the impact of the COVID-19 pandemic on patients with hidradenitis suppurativa (HS). In June 2020, we sent an anonymous survey to 109 patients, who were diagnosed with HS in our outpatient clinic from May 2018 to April 2020. Fifty patients (45.9%) completed and returned the survey. Forty-five participants (90.0%) denied any cancellation of hospitalisation due to the COVID-19 pandemic. Hospitalisation was postponed in 8% of cases and cancelled in 2%. Compared to prior to the pandemic, fewer patients consulted their primary physician for changing wound dressings and more changed the dressings themselves or were assisted by their family members. 13% of patients avoided doctor visits due to fear of COVID-19 and 26.1% minimised doctor visits. The Dermatology Life Quality Index showed a moderate to very severe impact on patients' Quality of Life (mean score = 10.06). Only one patient used telemedicine. Due to limited access to primary care and fear of COVID-19, the pandemic had a detectable impact on the hospital management of patients with HS in our facility. Telemedicine still plays a negligible role in primary wound care.


Subject(s)
COVID-19 , Hidradenitis Suppurativa , Telemedicine , Humans , COVID-19/epidemiology , Pandemics , Hidradenitis Suppurativa/complications , Hidradenitis Suppurativa/therapy , Cross-Sectional Studies , Quality of Life
4.
Acta Derm Venereol ; 101(12): adv00619, 2021 Dec 14.
Article in English | MEDLINE | ID: mdl-34698356

ABSTRACT

The disease burden of lichen planus and its impact on patients' quality of life have not been well studied. The aim of this mono-centre cross-sectional study was to investigate these factors. From June to September 2020, an anonymous survey was posted to 253 patients, who were diagnosed with lichen planus in our outpatient clinic from January 2018 to June 2020. Quality of life was evaluated using the Dermatology Life Quality Index (DLQI), the EuroQol 5-dimension 3-level score, and further quality of life indicators. Beck Depression Inventory II was used to evaluate symptoms of depression. A total of 100 patients completed and returned the survey. Lichen planus affected quality of life in 78% of cases. DLQI was higher for multiple localizations (r = 0.454, p < 0.001). Patients with genital lichen planus had a significantly higher DLQI (mean ± standard deviation (SD) 8.68 ± 6.96) than patients who were not affected in the genital area (5.01 ± 5.49; p = 0.009). DLQI was also significantly higher for ungual lichen planus (9.83 ± 7.6; not affected: 5.65 ± 5.84; p-value 0.039), and for cutaneous LP (mean 8.1, SD 6.22; not affected: 5.63 ± 6.12; p-value 0.045). Twenty-nine percent of patients had mild to moderate symptoms of depression, and 6% had severe symptoms of depression. Depression and reduced quality of life are an undetected and relevant burden affecting patients with lichen planus.


Subject(s)
Lichen Planus, Oral , Lichen Planus , Mental Disorders , Cost of Illness , Cross-Sectional Studies , Humans , Lichen Planus/diagnosis , Lichen Planus/epidemiology , Neglected Diseases , Quality of Life
5.
Int Wound J ; 18(4): 536-542, 2021 Aug.
Article in English | MEDLINE | ID: mdl-33554436

ABSTRACT

Recent studies showed that the COVID-19 pandemic caused collateral damage in health care in terms of reduced hospital submissions or postponed treatment of other acute or chronic ill patients. An anonymous survey was sent out by mail to patients with chronic wounds in order to evaluate the impact of the pandemic on wound care. Sixty-three patients returned the survey. In 14%, diagnostic workup or hospitalisation was cancelled or postponed. Thirty-six percent could not seek consultation by their primary care physician as usual. The use of public transport or long travel time was not related to limited access to medical service (P = .583). In ambulatory care, there was neither a significant difference in the frequency of changing wound dressings (P = .67), nor in the person, who performed wound care (P = .39). There were no significant changes in wound-specific quality of life (P = .505). No patient used telemedicine in order to avoid face-to-face contact or anticipate to pandemic-related restrictions. The COVID-19 pandemic impaired access to clinical management of chronic wounds in Germany. It had no significant impact on ambulatory care or wound-related quality of life. Telemedicine still plays a negligible role in wound care.


Subject(s)
COVID-19 , Pandemics , Telemedicine , Wounds and Injuries/therapy , Aged , Aged, 80 and over , Female , Germany , Humans , Male , Middle Aged , Quality of Life
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