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  • 1.
    Tufvesson Stiller, Helena
    et al.
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Dermatology and Venerology. Regional Cancer Center South East Sweden, Linköping, Sweden.
    Mikiver, R.
    Uppugunduri, S.
    Lindholm, C.
    Månsson Brahme, E.
    Schmitt-Egenolf, Marcus
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Dermatology and Venerology.
    Health Related Quality of Life in Melanoma Patients: characterization of a Swedish cohort2020In: British Journal of Dermatology, ISSN 0007-0963, E-ISSN 1365-2133, Vol. 182, no 2, p. 506-508Article in journal (Refereed)
    Abstract [en]

    Only few studies that have investigated the Health-Related Quality of Life (HR-QoL) in melanoma patients 1-4 , reviewed in Chernyshov et al.5 . This is to the best of our knowledge the first population-based study investigating HR-QoL in proximity to the time the patient has received melanoma diagnosis. A cross-sectional survey, approved by the ethics committee in Umeå, employing the Swedish European Organization for Research and Treatment of Cancer Quality of Life Questionnaires (EORTC QLQ-C30v.3.0) was performed.

  • 2.
    Tufvesson Stiller, Helena
    et al.
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Dermatology and Venerology. Regional Cancer Centre South East, Linköping, Sweden.
    Mikiver, Rasmus
    Uppugunduri, Srinivas
    Schmitt-Egenolf, Marcus
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Dermatology and Venerology.
    Perception of information to Swedish melanoma patients in routine clinical practice - a cross-sectional survey2022In: BMC Cancer, ISSN 1471-2407, E-ISSN 1471-2407, Vol. 22, no 1, article id 159Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: Comprehensible, relevant information empowers patients, allowing them to take an active part in their care. We aim to investigate how Swedish melanoma patients perceive information provided in routine clinical practice and explore the correlation between satisfaction with information, symptoms and functioning scales, and quality of life.

    METHODS: A cross-sectional study where EORTC QLQ-C30, EORTC QLQ-INFO25 and EQ-5D-3L questionnaires were sent to 1213 patients by post and 792 responded (65%).

    RESULTS: Only 0.5% reported that they wished to have received less information. The amount of information received and the satisfaction with that information was age-dependent, where older patients reported receiving less information than younger patients. Middle-aged patients were more satisfied with the information compared to both younger and older patients. The perception of having received sufficient information correlated negatively with anxiety. Higher satisfaction with the information also correlated positively with scores for functioning scales and negatively with degree of symptoms. No difference was perceived in information levels between disease stage apart from the scale "information about other services", where patients with more severe disease reported receiving more information. Men and women reported equal satisfaction concerning the information received.

    CONCLUSIONS: Patients lack sufficient information and age affects the perception of it. It is of utmost importance to tailor the information to suit the individual needs of a given patient, as satisfaction with the information received correlates with the patient's well-being.

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  • 3.
    Tufvesson Stiller, Helena
    et al.
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine. Regional Cancer Center Southeast, Linköping, Sweden.
    Schmitt-Egenolf, Marcus
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine.
    Fohlin, Helena
    Regional Cancer Center Southeast, Linköping, Sweden; Department of Biomedical and Clinical Sciences, Linköping University, Linköping, Sweden.
    Uppugunduri, Srinivas
    Regional Cancer Center Southeast, Linköping, Sweden; Department of Biomedical and Clinical Sciences, Linköping University, Linköping, Sweden.
    Patient reported experiences of Swedish patients being investigated for cancer during the Covid-19 pandemic2023In: Supportive Care in Cancer, ISSN 0941-4355, E-ISSN 1433-7339, Vol. 31, no 7, article id 416Article in journal (Refereed)
    Abstract [en]

    Background: Patient reported experiences in individuals being investigated for cancer have been recorded in a nationwide survey in Sweden, providing an opportunity to assess the impact of the Covid-19-pandemic.

    Material and Methods: Questionnaires from 45920 patients were analyzed to assess the experience of being investigated for cancer. Data from before the Covid-19-pandemic (2018–2019) was compared to data acquired during the pandemic (2020–2021), using chi-square and Wilcoxon rank sum tests. Both, patients who were cleared from suspicion of cancer and those who were diagnosed with cancer were included.

    Results: Fewer patients in total visited health services during the pandemic. However, patients that did seek help did so to a similar extent during as prior to the pandemic. Patient waiting time was perceived to be shorter during the pandemic and judged as neither too long nor too short by most patients. The emotional support to patients improved during the pandemic, whereas the support to next of kin declined. A majority of patients received the results from the investigation in a meeting with the physician. Although there was a preference for receiving results in a meeting with the physician, the pandemic has brought an increasing interest in receiving results by phone.

    Conclusion: Swedish cancer healthcare has shown resilience during the Covid-19-pandemic, maintaining high patient satisfaction while working under conditions of extraordinary pressure. Patients became more open to alternatives to physical “in person” health care visits which could lead to more digital visits in the future. However, support to significant others demands special attention.

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    fulltext
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