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      Most prevalent unmet supportive care needs and quality of life of breast cancer patients in a tertiary hospital in Malaysia

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          Abstract

          Background

          Addressing breast cancer patients’ unmet supportive care needs in the early stage of their survivorship have become a prime concern because of its significant association with poor quality of life (QOL), which in turn increases healthcare utilization and costs. There is no study about unmet supportive care needs of breast cancer patients in Malaysia. This study aims to assess the most prevalent unmet supportive care needs of Malaysian breast cancer patients and the association between QOL and patients’ characteristics, and their unmet supportive care needs.

          Methods

          A cross-sectional study was conducted at the Surgery and Oncology Clinic between May 2014 and June 2014 in a tertiary hospital in Malaysia. A total of 117 patients out of 133 breast cancer patients recruited by universal sampling were interviewed using a structured questionnaire consisted of three parts: participants’ socio-demographic and disease characteristics, Supportive Care Needs Survey-Short Form Questionnaire (SCNS-SF34) and European Organization for Research and Treatment of Cancer Quality of Life Questionnaire C30 (EORTC QLQ-C30).

          Results

          The highest unmet supportive care needs were observed in the psychological domain (Mean 53.31; SD ± 21.79), followed by physical domain (Mean 38.16; SD ± 27.15). Most prevalent unmet supportive care needs were uncertainty about the future (78.6 %), fears about the cancer spreading (76.1 %), feelings of sadness (69.2 %), feelings about death and dying (68.4 %), concerns about those close to the patient (65.0 %) and feeling down or depressed (65.0 %). Multivariate linear analysis showed that early breast cancer survivors diagnosed at an advanced stage and with greater physical and psychological needs were significantly ( p < 0.05) associated with poorer QOL.

          Conclusion

          Most prevalent unmet needs among Malaysian breast cancer patients were found in the psychological domain. Early breast cancer survivors with late stage diagnosis who had more unmet needs in psychological and physical domains were more likely to have a poor QOL.

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          Most cited references42

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          What are the unmet supportive care needs of people with cancer? A systematic review.

          The identification and management of unmet supportive care needs is an essential component of health care for people with cancer. Information about the prevalence of unmet need can inform service planning/redesign. A systematic review of electronic databases was conducted to determine the prevalence of unmet supportive care needs at difference time points of the cancer experience. Of 94 articles or reports identified, 57 quantified the prevalence of unmet need. Prevalence of unmet need, their trends and predictors were highly variable in all domains at all time points. The most frequently reported unmet needs were those in the activities of daily living domain (1-73%), followed by psychological (12-85%), information (6-93%), psychosocial (1-89%) and physical (7-89%). Needs within the spiritual (14-51%), communication (2-57%) and sexuality (33-63%) domains were least frequently investigated. Unmet needs appear to be highest and most varied during treatment, however a greater number of individuals were likely to express unmet need post-treatment compared to any other time. Tumour-specific unmet needs were difficult to distinguish. Variations in the classification of unmet need, differences in reporting methods and the diverse samples from which patients were drawn inhibit comparisons of studies. The diversity of methods used in studies hinders analysis of patterns and predictors of unmet need among people with cancer and precludes generalisation. Well-designed, context-specific, prospective studies, using validated instruments and standard methods of analysis and reporting, are needed to benefit future interventional research to identify how best to address the unmet supportive care needs of people with cancer.
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            Brief assessment of adult cancer patients' perceived needs: development and validation of the 34-item Supportive Care Needs Survey (SCNS-SF34).

            This study aimed to develop and validate a short version of the Supportive Care Needs Survey (SCNS) that would reduce respondent burden and could be used in routine cancer care, without compromising the psychometric properties of the original instrument. Secondary analyses of the data from two studies (n = 888 and 250) were undertaken. All 59 items of the original SCNS were assessed using psychometric analyses and evaluated for clinical utility. The 34 items retained were examined for internal consistency, ceiling and floor effects, known groups validity, convergent validity, sensitivity and readability. The 34-item instrument has five factors (psychological, health system and information, physical and daily living, patient care and support, and sexuality needs) identical to the original instrument, explaining 73% of the variance. Internal consistency was high with Cronbach's alpha coefficients for the five factors ranging from 0.86 to 0.96. Correlations of the 34-item short-form SCNS (SCNS-SF34) with three other measures of psychosocial well-being demonstrated convergent validity (r = 0.48-0.56). Kappa coefficients of at least 0.83 for each domain indicated almost perfect agreement between the 34-item and 59-item surveys to identify patients needing help. The 34-item SCNS maintained the psychometric properties of the original instrument and could be readily comprehended by people with seventh to eighth grade education. The SCNS-SF34 is a valid instrument for measuring cancer patients' perceived needs across a range of domains, and could be utilized as part of routine cancer care.
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              Psychological comorbidity and health-related quality of life and its association with awareness, utilization, and need for psychosocial support in a cancer register-based sample of long-term breast cancer survivors.

              Psychosocial comorbidity and quality of life (QOL) and its association with knowledge, utilization, and need for psychosocial support have been studied in long-term breast cancer survivors. One thousand eighty-three patients were recruited through a population-based cancer registry an average of 47 months following diagnosis (66% response rate). Self-report measures (e.g., Hospital Anxiety and Depression Scale, Posttraumatic Stress Disorder Checklist--Civilian Version, and Short-Form Health Survey) were used. Thirty-eight percent of patients had moderate to high anxiety, and 22% had moderate to high depression; posttraumatic stress disorder was observed in 12%. The overall psychological comorbidity was 43% and 26% for a possible and probable psychiatric disorder. Disease progress, detrimental interactions, less social support, a lower educational level, and younger age were predictors of psychological comorbidity (P<.004). Lower QOL (P<.01) and higher levels of anxiety (P<.001) were observed in cancer survivors compared to age-adjusted normative comparison groups. Time since diagnosis had no significant impact on psychological comorbidity as well as QOL. Forty-six percent of women felt insufficiently informed about support offers. Insufficient knowledge was associated with older age and lower education (P<.05). Since diagnosis, 57% had participated in cancer rehabilitation and 24% in other psychosocial support programs. Fifteen percent of all patients and 23% of those with a possible psychiatric disorder expressed their need for psychosocial support. Women with distress and perceived support needs who did not participate in past support programs were older, less educated, and less informed (P<.05). Findings show the long-term impact of breast cancer and indicate need for patient education, screening for psychosocial distress, and implementation of psychological interventions tailored in particular for older women.
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                Author and article information

                Contributors
                dr.zobaidaedib@gmail.com
                verasingam_kumarasamy@imu.edu.my
                norlia@ppukm.ukm.edu.my
                drmrizal@hotmail.com
                samidobaie@yahoo.com
                Journal
                Health Qual Life Outcomes
                Health Qual Life Outcomes
                Health and Quality of Life Outcomes
                BioMed Central (London )
                1477-7525
                22 February 2016
                22 February 2016
                2016
                : 14
                Affiliations
                [ ]Department of Community Medicine, International Medical University, Bukit Jalil, 57000 Kuala Lumpur Malaysia
                [ ]Department of Surgery, Universiti Kebangsaan Malaysia Medical Centre, Cheras, 56000 Kuala Lumpur Malaysia
                [ ]Department of Community Health, Faculty of Medicine, Universiti Kebangsaan Malaysia Medical Centre, Cheras, 56000 Kuala Lumpur Malaysia
                [ ]Faculty of Medicine, SEGi University, Kota Damansara, 47810 Petaling Jaya, Selangor Malaysia
                Article
                428
                10.1186/s12955-016-0428-4
                4762172
                26898558
                9d4655d3-268b-41c9-8583-7cac7dd46ac9
                © Edib et al. 2016

                Open AccessThis article is distributed under the terms of the Creative Commons Attribution 4.0 International License ( http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver ( http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.

                Categories
                Research
                Custom metadata
                © The Author(s) 2016

                Health & Social care
                supportive care,unmet needs,quality of life,breast cancer
                Health & Social care
                supportive care, unmet needs, quality of life, breast cancer

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