Psychosocial well-being of brain cancer patients and support persons: A mapping review of study types over time.

INTRODUCTION: This review examined the: (1) number of publications exploring psychosocial outcomes of adults with brain cancer and/or support persons between 1999 and 2019 and whether there has been a change in the type of research over time; and (2) proportion of intervention studies meeting Cochrane Effective Practice and Organisation of Care (EPOC) research design criteria. METHODS: Embase, The Cochrane Library, Medline and PsycINFO databases were electronically searched January 1999 to December 2019. Articles were examined against inclusion/exclusion criteria and coded into measurement, descriptive or intervention categories. Intervention studies were assessed against the EPOC design criteria. RESULTS: 220 eligible publications were identified. The number of total publications significantly increased by an average of 1 each year (95%CI = 0.7-1.3; p < 0.001). There was no significant change in the proportion of publications by study type across three time periods. Descriptive research represented the majority within each time period. Of the 17 intervention studies, only 7(41%) met EPOC design criteria. CONCLUSIONS: Published literature on brain cancer psychosocial outcomes has increased significantly. However, descriptive research dominates research output. To increase high-level knowledge that can guide psychosocial care of people with brain cancer, there is a need to undertake methodologically rigorous intervention trials.

Brain cancer patient and support persons' experiences of psychosocial care: a mapping of research outputs.

BACKGROUND: People with brain cancer and their support persons (SPs) are critical sources of information on the components of care that contribute to psychosocial outcomes. AIMS: To determine the proportion of studies that examined (1) at least one of 14 nominated components of psychosocial cancer care and (2) more than one component of care. METHODS: Medline, The Cochrane Library, PsycINFO and Embase were electronically searched for publications from January 1999 to December 2019. Publications that met the inclusion criteria were coded according to the number and type of psychosocial care components assessed from 14 listed components, and whether patient and/or SPs' views about care were elicited. RESULTS: Of the 113 included publications, 61 publications included patient-reported data only (54%), 27 included both patient and SP-reported data (24%) and 25 included SP-reported data only (22%). Most assessed a single component of care (77% of patient-reported and 71% of SP-reported). No publications assessed all 14 components. The "Psychosocial" component was the most frequently assessed component of care for patient-reported (n = 80/88, 91%) and SP-reported publications (n = 46/52, 88%). CONCLUSIONS: Publications reporting on psychosocial care in brain cancer present a relatively narrow view of patient and support person experiences. The inclusion of both patient and support person perspectives and the assessment of multiple components of care are required in future research to optimize psychosocial outcomes in brain cancer.

The System for Patient Assessment of Cancer Experiences (SPACE): a cross-sectional study examining feasibility and acceptability.

BACKGROUND: Continuous quality improvement in cancer care relies on the collection of accurate data on the quality of care provided. It is suggested that such an approach should: (i) measure the patient's care experience throughout the cancer trajectory; (ii) use items and response scales that measure concrete and specific aspects of care; (iii) minimise recall bias; (iv) minimise the burden placed on patients for providing data; (v) minimise administrative burden; and (vi) collect actionable data. The System for Patient Assessment of Cancer Experiences (SPACE) was developed to meet these objectives. This study describes the feasibility and acceptability of the SPACE in a sample of oncology outpatients. METHODS: The SPACE was examined in four medical oncology centres. Adult patients were approached by a research assistant prior to their scheduled consultation. Consenting participants completed the SPACE on a computer tablet. Items were tailored to the patient's cancer treatment phase. RESULTS: Of the eligible participants, 1143 consented (83%) and 1056 completed the survey (92%). The average time taken to complete the survey was 6 min 28 s. A large proportion of the sample indicated that the survey was acceptable (88-93% across three acceptability items). CONCLUSION: This study demonstrates that the SPACE can be feasibly administered each time a patient comes to the oncology unit and is acceptable to patients. The SPACE could be used to quantify the care experiences which patients receive during their cancer care. The resulting data could be used to set benchmarks and improve the performance of cancer clinics.

Receipt of information about diet by pregnant women: A cross-sectional study.

PROBLEM: Given the influence of diet on infant and maternal health outcomes, adequate knowledge about nutrition during pregnancy is critical. AIMS: To examine among women receiving antenatal care the proportion who: (1) believe information about diet should be provided as part of routine antenatal care; (2) recall receiving advice about diet as part of care including: (a) when information was provided, (b) the healthcare provider who gave information, and (c) the format in which it was provided; and (3) attitudes towards information received. METHODS: A cross-sectional survey was conducted with women attending a public antenatal clinic in New South Wales, Australia. Women were eligible to participate if they were: pregnant or had given birth in the previous 10 weeks; ≥18 years; and had at least one prior antenatal appointment for their current pregnancy. FINDINGS: A total of 223 women (64% consent rate) participated. While the majority (86%) believed healthcare providers should be giving dietary information to pregnant women, only 63% recalled receiving information during their current pregnancy. Most often it was given by a midwife (76%). Information was initially provided in the first (52%) or second (38%) trimester, in both written and verbal form (60%). Approximately one third of participants felt overwhelmed or confused by which foods should be avoided during pregnancy. CONCLUSIONS: A third of women did not recall receiving advice about diet as part of routine antenatal care. There is a need to develop a pathway to provide women with reliable, comprehensive advice about diet early in pregnancy.

Prevalence and correlates of the unmet supportive care needs of individuals diagnosed with a haematological malignancy.

BACKGROUND: Information about the unmet supportive care needs of haematological cancer patients is needed for service planning and to inform clinical practice. This study described the prevalence of, and factors associated with, unmet supportive care needs among haematological cancer patients. MATERIAL AND METHODS: A total of 380 adults diagnosed with haematological cancer were recruited from the outpatient department at three comprehensive cancer treatment centres in Australia. Of these, 311 completed a self-report questionnaire. Unmet needs were assessed using the 34-item Supportive Care Needs Survey (SCNS-SF34). The data were examined using descriptive statistics and logistic regression. RESULTS: Overall, 51% (95% CI 45-57%) of participants reported having at least one 'moderate to high' level unmet need, while 25% (95% CI 20-30%) reported 'no need' for help with any items. Unmet needs were most commonly reported in the psychological (35%; 95% CI 30-41%) and physical aspects of daily living (35%; 95% CI 30-41%) domains. The three most frequently endorsed items of 'moderate to high' unmet need were: lack of energy/tiredness (24%; 95% CI 20-30%), not being able to do the things you used to do (21%; 95% CI 17-26%), and uncertainty about the future (21%; 95% CI 16-25%). Patients' sociodemographic characteristics influenced unmet needs more than disease characteristics. Patients who were female, aged less than 55 years or not in the labour force had higher odds of reporting 'moderate to high' level unmet supportive care needs. CONCLUSION: Unmet supportive care needs are prevalent among haematological cancer patients, particularly in the psychological and physical aspects of daily living domains. These findings provide valuable insight about the range of resources, multidisciplinary linkages and referral pathways needed to address haematological cancer patients' unmet needs.