Patient-reported experiences on supportive care strategies following the introduction of the first Swedish national cancer strategy and in accordance with the new patient act

Westman, B.; Kirkpatrick, Lily; Ebrahim, Fereshte; Henriksson, Roger; Sharp, Lena

doi:10.1080/0284186x.2017.1418089

Cited by 23 publications

(24 citation statements)

References 18 publications

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“…Self‐reported fatigue in patients with oesophageal cancer is known to influence overall survival (Stauder et al, ). The access rate to our CNs (68%–81%) is similar to a recent Swedish national cross‐sectional study, demonstrating that 53% of 869 patients with gynaecological, haematological, upper gastrointestinal and head and neck cancer had access to a contact nurse (Westman, Kirkpatrick, Ebrahim, Henriksson, & Sharp, ). However, to our disappointment, a rather considerable proportion of patients (15%) reported that they never had access to their CN at our centre.…”

Section: Discussionsupporting

confidence: 84%

Patient‐reported experience and outcome measures during treatment for gastroesophageal cancer

et al. 2019

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Objective Gastroesophageal cancer has high mortality, and continuous assessment of patient‐reported data is salient for optimisation of supportive care. We aimed to evaluate our multidisciplinary concept with respect to patient‐reported variables. Methods At diagnosis and later during the treatment, three areas of patient‐reported measures were evaluated: the given information and care, fatigue (Multidimensional Fatigue Inventory [MFI‐20]), dysphagia (Ogilvie dysphagia score) and weight loss. Results Of 130 outpatients, planned for a surgical procedure and given a contact nurse (CN), 106 responded. During treatment, 81% of the patients were satisfied with their CN. The given information was considered very good or good by >90% and easily understood. Half of the patients reported need for supportive care, which was rated good by 85%. All dimensions of the MFI‐20 test, except mental fatigue, worsened during the treatment period. At diagnosis, 61% of the patients experienced eating problems, leading to 7% weight loss. Although dysphagia improved, weight loss reached 13% at the end of treatment. Conclusion A multidisciplinary concept can be of value in giving appropriate and understandable information, leading to high satisfaction with the provided care. However, as fatigue and weight loss increased during the treatment period, patients need structured multidisciplinary support.

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Section: Discussionsupporting

confidence: 84%

Patient‐reported experience and outcome measures during treatment for gastroesophageal cancer

et al. 2019

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“…Previous research from our group have shown benefits for patients with access to IWCPs (Westman et al, 2018). The IWCPs include written information about diagnosis, self-care advice related to treatment and side-effects and should be introduced at time for diagnose and updated accordingly.…”

Section: Access To Supportive Care Resourcesmentioning

confidence: 99%

Patient-reported perceptions of care after the introduction of a new advanced cancer nursing role in Sweden

Westman

Ullgren

Olofsson

et al. 2019

European Journal of Oncology Nursing

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Extensive research results show quality improvements associated with advanced cancer nursing roles. Despite this, these roles are not implemented in many countries. The aim of this cross-sectional, populationbased study was to compare patients' perception of care, before and after the introduction of a new advanced nursing role, the coordination contact nurse (CCN), in a region in Sweden. Method: All patients (with gynaecological, haematological, Head & Neck, upper gastrointestinal cancers) diagnosed in the region the year prior and one-year post introducing the new CCN role were identified from the Swedish Cancer Register. Data were collected using the European Organization of Research and Treatment of Cancer [EORTC] Quality of Life Questionnaire (QLQ-C30 and QLQ-INFO25) and a study specific questionnaire. Result: The results, based on baseline (n = 869) and follow-up data (n = 1003), show statistically significant patient-reported improvements after the introduction of the CCN role, regarding health-related patient information (EORTC QLQ-INFO25 global mean score increased from 41.23 to 44.16, p = 0.0006). We found statistically significant improvements related to availability of supportive care resources, e.g. increased reported access to contact nurse (from 53% to 66%, p ≤ 0.0001) and individual written care plans (from 40% to 54%, p < 0.0001). We also found some improvements related to patient involvement and care coordination, but also room for further developments. Conclusion: The implementation of the new advanced cancer nursing role may have contributed to important improvements, but it has also identified areas in need of development. Further research with long-term evaluations of CCN roles in other contexts, are both needed and ongoing .

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“…Interestingly, only 10% reported that they had been informed about the right to a new medical assessment (ie, a second opinion). In Sweden, it is prescribed by law that the patients should be informed about this right, and similarly low proportions have previously been reported in a mixed cancer population …”

Section: Discussionmentioning

confidence: 93%

“…In Sweden, it is prescribed by law that the patients should be informed about this right, and similarly low proportions have previously been reported in a mixed cancer population. 42 It was encouraging to notice that the majority of younger patients had received information about the risk of infertility since there is evidence that pretreatment fertility counseling improves QoL in women with cancer. 43…”

Section: Overall Survivalmentioning

confidence: 99%

Introducing patient‐reported outcome in the acute leukemia quality registries in Sweden

Lennmyr

Karlsson

Abrahamsson

et al. 2020

European J of Haematology

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This is an open access article under the terms of the Creative Commons Attribution-NonCommercial-NoDerivs License, which permits use and distribution in any medium, provided the original work is properly cited, the use is non-commercial and no modifications or adaptations are made. AbstractObjectives: The use of patient-reported outcome (PRO) measured outside clinical trials is not well defined. We report the first analysis of the prospective PRO study within the Swedish acute myeloid leukemia (AML) and the acute lymphoblastic leukemia (ALL) registries. Methods: PRO was requested 6 months after diagnosis. The EORTC Quality of life Questionnaire Core 30-item, the Patient Health Questionnaire-8 (PHQ-8), and questions from a Swedish National Cancer Questionnaire were used.Results: An invitation letter was sent to 398 patients; 255 (64%) responded, 60% web-based, and 40% on paper. The ALL cohort had lower physical, role and social functioning, higher symptom burden, and more financial difficulties compared to the AML cohort. A PHQ-8 score ≥ 10p, which indicates depression, was reported in 18% of the patients; 33% of these patients reported being prescribed antidepressants. The patients' overall experience of care was satisfying, but more psychological and practical support was desired. There was no difference in survival between patients who reported their PRO and those who did not. Follow-up at 2 and 4 years is ongoing.Conclusions: PRO collected in a registry-based setting is feasible, but the selection of time points and questionnaires are delicate in a diverse patient population.

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Patient-reported experiences on supportive care strategies following the introduction of the first Swedish national cancer strategy and in accordance with the new patient act

Abstract: The supportive care strategies suggested in Swedish legislation and policy documents may be useful but are only available for some patients. The implementation goals for the National Cancer Strategy and the Swedish Patient act have not been reached.

Cited by 23 publications

References 18 publications

Patient‐reported experience and outcome measures during treatment for gastroesophageal cancer

Patient‐reported experience and outcome measures during treatment for gastroesophageal cancer

Patient-reported perceptions of care after the introduction of a new advanced cancer nursing role in Sweden

Introducing patient‐reported outcome in the acute leukemia quality registries in Sweden

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