Differences in health-related quality of life between native and foreign-born gynaecological cancer patients in Sweden: a five-year cross-sectional study.

PURPOSE: To examine differences in health-related quality of life (HRQoL) between native and foreign-born gynaecological cancer patients in Sweden, taking into account clinical, demographic, and socioeconomic factors. METHODS: The 30-item European Organisation for Research and Treatment of Cancer quality of life questionnaire (QLQ-C30) and a study-specific questionnaire covering demographic and socioeconomic factors were answered by 684 women aged ≥ 18 years old, diagnosed in 2014, 2016, or 2018 with gynaecological cancer in the Stockholm-Gotland health care region, Sweden. Clinical data were obtained from the Swedish Cancer Register. Data were analysed using the Kruskal-Wallis test and linear regression. RESULTS: The women had a mean age of 65.4 years, with 555 (81.1%) born in Sweden, 54 (7.9%) in other Nordic countries (ONC), 43 (6.3%) in other European countries (OEC), and 32 (4.7%) in non-European countries (NEC). HRQoL differed significantly between the four groups for 14 of the 15 QLQ-C30 scales/items. On average, Swedish-born women scored 2.0, 15.2, and 16.7 points higher for QoL/functioning scales/items and 2.2, 14.1, and 18.7 points lower for symptom scales/items, compared with ONC-, OEC-, and NEC-born women, respectively. In adjusted analyses, none of the differences between Swedish-born and ONC-born women were significant, while for OEC- and NEC-born women the differences were significant for most QLQ-C30 scales/items. CONCLUSION: HRQoL differs between native and foreign-born gynaecological cancer patients in Sweden, with lower HRQoL the further from Sweden the women are born. A more individualised cancer care, with tailored support to optimize HRQoL is needed for this vulnerable group of patients.

Patients with low activation level report limited possibilities to participate in cancer care.

BACKGROUND: Cancer care trajectories are often complex, with potent multimodality treatments and multiple interactions with health care providers. Communication and coordination are challenging and the patients' responsibilities to take on more active roles in their own care are increasing. OBJECTIVE: This study aimed to investigate associations between patient activation level and participation in cancer care, sociodemographic characteristics, clinical data, health-related quality of life (HRQoL) and helpfulness of received information. METHODS: In this cross-sectional population-based study, patients completed questionnaires on patient activation, perceived participation, HRQoL, helpfulness of received information and sociodemographic characteristics. Responses to the patient activation measures (PAMs) were classified into four levels (higher levels indicating more activation). Data on age, sex and cancer diagnosis were collected from the Swedish Cancer Register. RESULTS: Data from 682 patients were analysed. On comparing patients at PAM levels 1 and 4, the latter reported significantly higher possibilities to influence care decisions (46.6% vs. 20.8%) and to ask questions regarding treatment and care (93.4% vs. 68.4%). Patients at PAM level 4 reported wanting to influence decision-making to a higher extent, compared with patients at other PAM levels, and reported clinically significantly higher HRQoL. No significant differences were found regarding sociodemographic characteristics. CONCLUSION: We found strong associations between perceived patient participation and activation levels, with limited possibility for participation among those with lower activation levels. PATIENT OR PUBLIC CONTRIBUTION: Discussions with patient representatives have raised the importance of participation. The preliminary findings were presented and discussed in a workshop with representatives from 21 cancer patient advocacy groups.

A psychometric evaluation of the Functional assessment of cancer therapy-kidney symptom index (FKSI-19) among renal cell carcinoma patients suggesting an alternative two-factor structure.

PURPOSE: To psychometrically evaluate the hypothesized four-factor structure of the 19-item Functional Assessment of Cancer Therapy-Kidney Symptom Index (FKSI-19) health-related quality of life (HRQoL) instrument in a sample of surgically treated renal cell carcinoma (RCC) patients and examine if an alternative factor structure with good psychometric properties may be derived from the available items. METHODS: The model fit of the hypothesized four-factor structure was examined using confirmatory factor analysis on cohort data from 1731 individuals included in the National Swedish Kidney Cancer Register who had undergone surgery for RCC during the three years 2016-2018 and answered the FKSI-19 instrument within 6-12 months after surgery. Exploratory factor analysis was applied to the same dataset to derive a possible alternative factor solution. RESULTS: The four-factor structure did not reach the thresholds for good model fit using the normed χ2-value or the Comparative Fit Index, although the Standardized Root Mean Square Residual and Root Mean Square Error of Approximation measures indicated good and acceptable model fits, respectively. An alternative 14-item trimmed FKSI version (FKSI-14) with a two-factor structure derived from the available FKSI-19 items was found to measure the same aspects of HRQoL as the full FKSI-19 instrument. CONCLUSION: The present study is the first to use psychometric methods for examining the factor structure of the FKSI-19 instrument. The hypothesized four-factor structure of FKSI-19 provided a barely acceptable model fit. The two-factor FKSI-14 structure may be used as an alternative or complement to the four-factor structure when interpreting the FKSI-19 instrument.

Access to supportive care during and after cancer treatment and the impact of socioeconomic factors.

BACKGROUND: Sweden's national cancer strategy points out several areas of cancer care that need improvements. Among them the need for supportive care resources to be accessible through the entire cancer trajectory and the reduction of socioeconomic inequalities. The aim of this study was to compare the patient-reported access to supportive care in the Stockholm-Gotland region between patients diagnosed in 2014 and 2016. The aim was also to describe how socioeconomic and other demographic factors impact access to supportive care. MATERIAL AND METHODS: All patients with gynaecological, head and neck, haematological and upper gastrointestinal cancers diagnosed in the Stockholm-Gotland regions were identified through the Swedish Cancer Registries. Data were collected via a questionnaire on demographic, socioeconomic factors and patients' perception (n = 1872) of access to supportive care. Data were summarized using descriptive statistics and logistic regression was used for relevant variables. RESULTS: Access to some supportive care resources, such as contact nurses (CNs) and individual written care plans (IWCPs) had significantly improved from 2014 to 2016. The proportion of patients that had received information about patient advocacy groups (PAGs) had also improved but remained on a relatively low level (29 and 35%, respectively). The proportion of patients being refereed to palliative care (PC) did not change between 2014 and 2016. In total, 10% of the patients reported to having received information on second medical opinion (SMO). Patients that had undergone multimodality cancer treatment were more likely to report access to supportive care, and those with lower education levels were more likely to have access to CNs and IWCPs. CONCLUSION: Access to some of the supportive care resources have shown improvements in the Stockholm-Gotland region but further efforts are required, especially regarding access to PC, information about PAGs and SMOs.

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.

INTRODUCTION: Several supportive care strategies are described in Swedish legislation and policy documents, such as the National Cancer Strategy and the Patient act. No previous systematic evaluation from a patient perspective has been performed. The aim of this study was to evaluate how these supportive care strategies are experienced by patients treated for cancer in the Stockholm-Gotland region. MATERIAL AND METHODS: In this cross-sectional study, we identified patients (diagnosed with gynaecological, haematological, upper gastrointestinal and head and neck cancer during 2014) from the Swedish Cancer Register. The European Organization of Research and Treatment of Cancer, EORTC, Quality of Life Questionnaires, QLQ-C30, Information QLQ-INFO25 and a study-specific questionnaire was used to collect data during follow-up after cancer treatment. We collected data on 869 cancer patients' perception of availability and access to supportive care strategies and how they were experienced. RESULTS: Among the supportive care strategies suggested in the legislation and policy documents, just over half of the patients (n = 393, 53%) reported that they had access to a contact nurse, while 43% (n = 312) had received an individual written care plan and 16% (n= 137) had been referred to palliative care. Only 29% (n = 218) of the patients reported that they had received information about patient advocacy groups and 8% (n= 62) on medical second opinions from their cancer care team. DISCUSSION: 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.

My Cancer Care Plan as a Web-Solution.

The Swedish National Cancerplan states that patients should be offered an Individual Care Plan (ICP) for the treatment and survivorship care and rehabilitation planning. As there is no web-solution for ICP available, the project aim is to develop a non-commercial web-solution based on communication between the contact nurse and the patient.