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  • 1.
    Axelsson, Lena
    et al.
    Sophiahemmet University.
    Benzein, Eva
    Lindberg, Jenny
    Persson, Carina
    End-of-life and palliative care of patients on maintenance hemodialysis treatment: A focus group study2019In: BMC Palliative Care, ISSN 1472-684X, E-ISSN 1472-684X, Vol. 18, no 1, article id 89Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: Despite complex illness trajectories and a high symptom burden, palliative care has been sub-optimal for patients with end-stage kidney disease and hemodialysis treatment who have a high rate of hospitalization and intensive care towards end of life. There is a growing awareness that further development of palliative care is required to meet the needs of these patients and their family members. In this process, it is important to explore healthcare professionals' views on provision of care. The aim of this study was therefore to describe nurses' and physicians' perspectives on end-of-life and palliative care of patients treated with maintenance hemodialysis.

    METHODS: Four focus group interviews were conducted with renal nurses (17) and physicians (5) in Sweden. Qualitative content analysis was used to analyze data.

    RESULTS: Participants were committed to giving the best possible care to their patients, but there were challenges and barriers to providing quality palliative care in nephrology settings. Professionals described palliative care as end-of-life care associated with hemodialysis withdrawal or palliative dialysis, but also identified care needs and possibilities that are in line with an earlier integrated palliative approach. This was perceived as complex from an organizational point of view. Participants identified challenges related to coordination of care and different perspectives on care responsibilities that impacted symptom management and patients' quality of life. Communication issues relating to the provision of palliative care were revealed where the hemodialysis setting was regarded as an impediment, and personal and professional experiences, beliefs and knowledge were considered of major importance.

    CONCLUSIONS: Nurses and physicians identified a need for the improvement of both late and earlier palliative care approaches. The results highlighted a requirement for and possibilities of training, counselling and support of health care professionals in the dialysis context. Further, multi-professional palliative care collaborations should be developed to improve the coordination and organization of end-of-life and palliative care of patients and their family members. A climate allowing conversations about advance care planning throughout the illness trajectory may facilitate the gradual integration of palliative care alongside life-prolonging treatment for improved support of patients and families.

  • 2. Beck, Ingela
    et al.
    Olsson Möller, Ulrika
    Malmström, Marlene
    Klarare, Anna
    Samuelsson, Henrik
    Lundh Hagelin, Carina
    Sophiahemmet University.
    Rasmussen, Birgit
    Fürst, Carl Johan
    Translation and cultural adaptation of the Integrated Palliative care Outcome Scale including cognitive interviewing with patients and staff2017In: BMC Palliative Care, ISSN 1472-684X, E-ISSN 1472-684X, Vol. 16, no 1, article id 49Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: To expand our clinical and scientific knowledge about holistic outcomes within palliative care, there is a need for agreed-upon patient-reported outcome measures. These patient-reported outcome measures then require translation and cultural adaptation, either from country-specific languages to English, or the other way around. The aim of this study was to translate and cross-culturally adapt the Integrated Palliative care Outcome Scale (IPOS) to the Swedish care context.

    METHODS: Swedish versions of IPOS Patient and IPOS Staff were developed and culturally adapted using recommended guidelines including cognitive interviews with patients (n = 13) and staff (n = 15) from different care contexts including general and specialised palliative care.

    RESULTS: The comprehension and judgement difficulties identified in the pre-final patient and staff versions were successfully solved during the cognitive interviewing process. IPOS was well accepted by both patients and staff, none of the questions were experienced as inappropriate, and all questions were judged important.

    CONCLUSIONS: In this study, we translated and culturally adapted the patient and staff versions of IPOS, and demonstrated face and content validity and acceptability of the scale through cognitive interviewing with patients and staff within residential care facility, surgical and specialised palliative home care units. Cognitive interviewing in parallel with patients and staff in rounds, with tentative analysis in between, was a suitable method for identifying and solving challenges with comprehension and evaluation in the pre-final version of IPOS. The Swedish IPOS is now available for use in a variety of clinical care settings.

  • 3.
    Holm, Maja
    et al.
    Sophiahemmet University.
    Doveson, Sandra
    Sophiahemmet University.
    Lindqvist, Olav
    Wennman-Larsen, Agneta
    Sophiahemmet University.
    Fransson, Per
    Quality of life in men with metastatic prostate cancer in their final years before death: a retrospective analysis of prospective data2018In: BMC Palliative Care, ISSN 1472-684X, E-ISSN 1472-684X, Vol. 17, no 1, article id 126Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: Quality of Life (QoL) is the most important outcome for patients in palliative care along with symptom alleviation. Metastatic prostate cancer (mPC) is a life-threatening illness, and hence, a palliative care approach may be beneficial to this group. Over time, new life-prolonging treatments have been developed for men with mPC, but the possibility to prolong life should also be balanced against the men's QoL, particularly because there are side effects involved with these treatments. The aim of this study was to evaluate QoL, functioning and symptoms in men with mPC during their final years before death.

    METHODS: This is a retrospective analysis of data from a long-term prospective study of men (n = 3885) with prostate cancer from two regions in Sweden. Validated questionnaires asking about participants' QoL, functioning and symptoms were used to collect data. From the overall study, 190 men with mPC were identified. They were stratified into three groups, depending on the amount of time that had passed between the last questionnaire and their death; < 6 months, 6-18 months and > 18 months before death.

    RESULTS: Men with mPC generally rated their QoL poorly compared to established clinically significant threshold values. The group of men that were < 6 months before death rated their QoL, functioning and several symptoms significantly worse than the two other groups. Men that died after the year 2006 reported lower QoL and functioning and more pain and fatigue than those who died before 2006.

    CONCLUSION: The results in this study indicate that men with mPC have unmet needs with regards to QoL and symptoms. A palliative care approach, alongside possible life-prolonging treatments, that focuses on QoL and symptom relief, may serve as an important frame to give the best support to these men in their final years of life.

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