Supportive care of rural women with breast cancer in Tasmania, Australia: changing needs over time

Providing for patients' psychosocial needs is a potential means of minimising cancer morbidity. Needs assessments can guide responsive patient-centred care. A longitudinal survey of women with early breast cancer consulting a breast nurse in a primarily rural state of Australia was undertaken to measure unmet supportive care needs, identify changes in unmet needs across time and compare results with previous studies. Needs assessments were completed with the Supportive Care Needs Survey (SCNS) at 1 month (n = 74) and 3 months (n = 83) post-diagnosis. Access to services was also examined. High levels of psychological and health system and information needs were identified at 1 month post-diagnosis, but these decreased significantly at 3 months post-diagnosis. Sexuality domain needs increased significantly during the same time. Compared to a previous SCNS study of rural women with breast cancer, unmet supportive care needs in this study were significantly lower than previously reported, although assistance with energy levels (i.e. fatigue) continues to be an unmet need for women with breast cancer. Results suggest there have been positive cultural changes within healthcare systems, specifically in better informing patients and providing support. Although services appear to be more responsive to breast cancer patients, significant unmet needs still exist.     

Prevalence and factors associated with unmet needs in post‐treatment cancer survivors: A systematic review

Cancer survivors may experience unmet needs beyond the end of their treatment. This paper aimed to explore the prevalence and most frequently found unmet needs and to identify factors associated with higher levels of total unmet needs and with each domain separately. Five databases were searched using the keywords neoplasms, survivors, needs assessment, health services’ needs and demands. The results were presented based on the strength of the evidence (strong, moderate and weak association) and the categorisation of the pooled prevalence of at least one unmet need (high, moderate, low). Twenty‐six studies were included in the review. A higher prevalence of at least one reported unmet need was observed in survivors with less time since treatment and in women with breast cancer. The most frequently reported unmet needs were fear of cancer recurrence and requesting up to date information. Strong evidence was found for an association between a higher number of unmet needs and younger age, higher anxiety and poorer quality of life. Future studies on unmet needs should report how unmet needs are associated with each domain separately. This might solve the inconclusive evidence found for the stage of the disease at diagnosis and depression.     

Health Disparities in Unmet Support Needs of Women with Gynecologic Cancer: An Exploratory Study

International research suggests that many women with gynecological cancers have unmet supportive care needs that often correlate with greater psychological distress and poorer quality of life. The United States has a diverse population and evolving health care system, so this study aims to identify the support needs of women with gynecologic cancer in this geographic region. Furthermore, there are numerous health disparities with regards to cancer care; therefore, a second aim of this study is to explore health disparities in unmet support needs. Fifty-one women with gynecologic cancers completed an adapted version of the Supportive Care Needs Survey. Sociodemographic and cancer-related information were also collected. Findings revealed a high frequency of unmet support needs, particularly in the psychological, physical, and practical domains. Additionally, disparities in levels of support needs were found to be dependent on income and minority status. Specifically, unmet needs in the physical/daily living and practical domains were dependent on income, and minorities reported significantly higher support needs in the sexuality and psychological need domains than their majority counterparts. These results highlight the potential benefits of enhanced multidisciplinary services to better assess and address patients’ needs. Nonetheless even with enhanced services, the findings, consistent with other health disparities research, suggest lower income affects access to care, so more research is needed on how to overcome these barriers.     

Meeting the support and information needs of women with advanced breast cancer: a randomised controlled trial

Addressing psychosocial and quality of life needs is central to provision of excellent care for people with advanced cancer. This study tested a brief nurse-delivered intervention to address the needs of urban women with advanced breast cancer. This study was conducted at four large urban hospitals in Australia. One hundred and five women with advanced breast cancer were recruited and randomised to receive the intervention or usual care, then asked to complete the European Organisation of Research and Treatment of Quality of life Q-C30 version (2.0) (EORTC Q-C30) (version 2) and Supportive Care Needs Survey (SCNS) at 1 month and 3 months postrecruitment. No significant differences were detected between intervention and usual care groups in the SCNS or the EORTC Q-C30 subscale scores. However, when the groups were divided into high needs (score of above 50) and low baseline needs (score of 50 or below) for each SCNS subscale, a significant difference between intervention and usual care groups was found in the psychological/emotional subscale among women with high baseline needs. In conclusions, this study demonstrated that a face-to-face session and follow-up phone call with a breast care nurse significantly reduced the psychological and emotional needs of those with high initial needs. There was no evidence of the intervention influencing the quality of life; or perceived needs of women with low initial psychological/emotional needs or perceived needs in other domains. Possibly, the intervention was not sufficiently intense to achieve an effect.     

Racial/ethnic differences in adequacy of information and support for women with breast cancer

BACKGROUND: Providing breast cancer patients with needed information and support is an essential component of quality care. This study investigated racial/ethnic variations in the information received and in the availability of peer support. METHODS: In total, 1766 women who were diagnosed with nonmetastatic breast cancer and reported to the Los Angeles County Surveillance, Epidemiology, and End Results registry from June 2005 to May 2006 were mailed a survey after initial treatment. Among accrued cases, 96.2% met eligibility criteria (n = 1698), and 72% completed the survey. Race/ethnicity categories were white, African American, and Latinas (2 categories indicating low or high acculturation, which was determined by using the Short Acculturation Scale for Hispanics). Outcomes included receipt and need for treatment-related and survivorship-related information, difficulty understanding information, and support from women with breast cancer. RESULTS: More women reported receiving treatment-related information than survivorship-related information. After adjusting for sociodemographic, clinical, and treatment factors, a higher percentage of low acculturated Latina women desired more information on treatment-related and survivorship-related issues (P < .001). Significantly more Latina low acculturated women than white women reported difficulty understanding written materials, with 74.5% requiring help from others. A higher percentage of all minority groups compared with whites reported no contact with other women with breast cancer (P < .05) and reported less contact through family/friends (P < .05). Women rated the benefit of talking to other women high, particularly with emotional issues. CONCLUSIONS: Continued efforts to provide culturally appropriate information and support needs to women with breast cancer are necessary to achieve quality care. Latinas with low acculturation reported more unmet information and care support needs than women in other racial/ethnic groups.     

Fertility- and menopause-related information needs of younger women with a diagnosis of early breast cancer.

PURPOSE: The use of chemotherapy and endocrine therapies in the treatment of premenopausal women carries with it reproductive and gynecologic implications that young women may find distressing and discordant with plans for childbearing. This multicenter study aimed to investigate fertility- and menopause-related information needs among young women with a diagnosis of early-stage breast cancer. PATIENTS AND METHODS: Two hundred twenty-eight women with a diagnosis of early-stage breast cancer who were aged 40 years or younger at diagnosis and who were 6 to 60 months after diagnosis were entered onto the trial. Participants completed a mailed self-report questionnaire that included a purposely designed fertility- and menopause-related information needs survey and standardized measures of distress, anxiety, quality of life, menopausal symptoms, and information-seeking style. RESULTS: Seventy-one percent of participants discussed fertility-related issues with a health professional as part of their breast cancer treatment, and 86% discussed menopause-related issues. Consultation with a fertility or menopause specialist was the most preferred method of obtaining this information. Receiving fertility-related information was rated as being significantly more important than receiving menopause-related information at time of diagnosis (P < .001) and at treatment decision making (P = .058). Receiving menopause-related information was rated as being significantly more important than receiving fertility-related information during adjuvant treatment (P < .05), at completion of adjuvant treatment (P < .001), and during follow-up (P < .001). Common questions, sources of information, and correlates of perceived importance were identified. CONCLUSION: The results of this study suggest that younger women have unmet needs for fertility- and menopause-related information and provide preliminary empirical data to guide the development of better fertility- and menopause-related patient education materials for younger women with a diagnosis of early breast cancer.     

Age‐related supportive care needs of women with gynaecological cancer: A qualitative exploration

Women with gynaecological cancer (GC) experience significant morbidity with associated needs for support, not all of which are currently met by the current system. Types and levels of unmet needs vary across age and the care continuum. This study aimed to identify the shared and unique supportive care needs of younger and older GC patients and survivors to inform improved supportive care. Nineteen younger and ten older women, 3 months to 5 years post a GC diagnosis, were purposively recruited during active treatment, and at early and extended survivorship. Audiotaped and transcribed semi‐structured interviews were thematically analysed to establish areas of needs. GC patients reported nine shared needs relating to support, isolation, uncertainty, information, asking questions, escape from illness, advocacy, loss and finding meaning. Younger patients reported unique needs related to the impact of treatment‐induced menopause. There is a need for a systematic screening process to identify women who require and want additional help, to ensure appropriate and timely assistance or referrals are provided. Identification of needs will allow health professionals to provide relevant and timely information and support services, resulting in improved quality of life for women affected by GC.     

Evolution of Symptom Burden of Advanced Lung Cancer Over a Decade

Introduction

Lung cancer is associated with higher levels of symptom distress and unmet needs than other cancer types. We assessed changes in symptoms, function, understanding, and preferences of patients with advanced lung cancer over a 10-year period.

Coping Strategies and Experiences in Women with a Primary Breast Cancer Diagnosis

Background: Women with breast cancer experience problems in multiple aspects of their lives, but applying effective strategies can result in enhancing their quality of life and their psychosocial adaptation to the disease. However, there is little information about the strategies that women use to cope with complications associated with their experiences following a breast cancer diagnosis. Objectives: The aim of this study was to explore the experience of coping behavior and the main strategies that women use in dealing with a breast cancer diagnosis. Methods: This study was conducted according to a qualitative phenomenological design to investigate women’s experiences in living with breast cancer and the related complications and how they cope with these issues. Purposive sampling was used for recruiting participants with breast cancer, and data collection was conducted by semi-structured, in-depth interviews with 22 patients. The transcribed interviews were analyzed using Van Manen’s thematic approach. Results: The age range of the women was 32-68. Most were married and received adjuvant therapy (i.e., mastectomy surgery and chemo-radiation). Three dominant themes that emerged from the interviews were emotional turmoil, avoidance, and logical efforts. Conclusion: The findings highlight the importance of addressing psycho-oncology intervention programs to address the unmet pyscho-social and palliative care needs of patients suffering from breast cancer.     

Changes and predictors of unmet supportive care needs in taiwanese women with newly diagnosed breast cancer

Purpose/Objectives: To investigate changes in unmet supportive care needs and factors affecting those needs in Taiwanese women with newly diagnosed breast cancer.Design: Prospective longitudinal survey.Setting: Two general surgery outpatient departments at a large medical center in northern Taiwan.Sample: 124 women with newly diagnosed breast cancer.Methods: Needs were assessed with the Supportive Care Needs Survey-Short Form at diagnosis (T1) and one month (T2), two months (T3), and three months (T4) after diagnosis.Main Research Variables: Supportive care needs.Findings: Women had moderate-to-high levels of unmet needs, with the highest being in the health system and information domain at each time point. Levels in the domains of psychological, health system and information, and sexuality needs were higher (p < 0.001) at T1 than at T2, T3, and T4. However, levels of unmet physical and daily living needs increased significantly over time (p < 0.001). Unmet supportive care needs were significantly predicted by younger age and higher levels of education, symptom distress, trait anxiety, state anxiety, and time since diagnosis.Conclusions: Supportive care needs changed significantly over time and were predicted by personal characteristics, as well as physical and emotional factors.Implications for Nursing: Oncology nurses should assess the needs of patients with breast cancer and provide them with individualized, culturally sensitive informational, social, and emotional support from breast cancer diagnosis through the first four months of treatment.     

Public and Professional Educational Needs for Downstaging Breast Cancer in Egypt

We conducted focus groups with women from urban and rural areas in the Nile Delta region to investigate their attitudes regarding breast cancer diagnosis, treatment, and screening. Six 60-min focus groups, each group comprised of 6–10 women with ages between 20–69 years, were conducted. Discussions included breast health, breast cancer diagnosis, treatment, early detection and screening, and communication for breast health. Almost all urban and rural women reported that women do not see physicians until they are seriously ill or have advanced cancer. They reported that oncologists or gynecologists were important to be seen first if a woman suspected breast cancer and primary care physician are not the primary line of cancer diagnosis. Other deterring factors besides distrust in primary care physicians included attitude that breast cancer equals death and lack of knowledge of early detection and screening techniques. Women felt that public education campaigns must be implemented to improve early detection and screening methods for breast cancer. The majority of beliefs regarding breast cancer and screening were common among urban and rural women. Culture-specific and tailored professional and public education programs in developing countries are essential for achieving downstaging cancer.     

Long-term telephone therapy outcomes for breast cancer patients

We present the results of a breast cancer clinical trial that tested two therapy interventions delivered by telephone. Women (N = 218) with Stages I, II, or III breast cancer were randomly assigned to breast cancer health education or emotional expression interventions, or to a standard care control condition. Outcome and process measures were obtained at baseline, 6-month and 13-month follow-ups. Oncology certified nurses conducted the therapies in six, 30-minute individual phone sessions. Women in the health education condition reported significantly better knowledge and less perceived stress compared to women in the emotional expression and control conditions. No treatment effects, however, were obtained for quality of life or mood, and all women generally improved on these measures over time. Secondary analyses showed that younger women and women with a more advanced stage of breast cancer reported significantly greater avoidant coping. The data show that telephone therapy is a viable delivery modality and that distress improves with time for most women. Overall, this study showed that neither of the two telephone interventions tested had a meaningful effect on quality of life or mood.     

Psychological impact of prophylactic oophorectomy in women at increased risk for ovarian cancer

Women with a family history consistent with a hereditary breast/ovarian cancer syndrome are at significantly increased risk for ovarian cancer. Prophylactic oophorectomy is an option for high-risk women. This study explores the psychosexual impact of prophylactic oophorectomy. A qualitative methodology was selected as most appropriate as no previous research has examined this issue. In-depth interviews were conducted with fourteen women, between 4 months and 7 years after prophylactic oophorectomy. Of these, six were pre- and eight were postmenopausal at the time of oophorectomy. Even though individual differences were observed, a majority view was expressed on several issues. All but one participant reported being satisfied with their decision to undergo oophorectomy. Women emphasised that the procedure had decreased their anxiety about developing ovarian cancer. Postmenopausal women reported no negative impact on their libido. Amongst premenopausal women all but one commenced hormone replacement therapy (HRT) following surgery and, in these women, HRT appeared to mitigate the sexual impact of the procedure. Premenopausal women reported unmet information needs both before and after the procedure, including the effects of surgical menopause and the link between HRT and breast cancer. This exploratory study suggests that prophylactic oophorectomy is a psychologically acceptable risk reduction strategy in high-risk women.     

Predictors of Complementary and Alternative Medicine Use by Breast Cancer Patients in Bandung,Indonesia

Background: The study aimed to assess complementary and alternative medicine (CAM) use and their associated factors with breast cancer patients in Bandung, Indonesia. Materials and Methods: In total, 330 breast cancer patients were administered questionnaires on their CAM use and CAM predictive factors including socio-demographic parameters, clinical data and quality of life, trust in physicians, trust in hospitals, satisfaction and informational needs. Data were analyzed using univariate analysis and multivariate log regreesion analysis. Results: Overall 33.3% of patients reported use of CAM. Lower income, lower education, presence of metastasis, prolonged diagnosis, less trust in physician were found to be highly associated with CAM use. Conclusions: CAM use by breast cancer patients can be interpreted as an attempt to explore all possible options, an expression of an active coping style, or expression of unmet needs in the cancer care continuum. Physicians need to openly discuss the use of CAM with their patients and identify whether they have other unmet supportive needs.     

Supportive care needs of men living with prostate cancer in England: a survey

Men with prostate cancer have various treatment options depending upon their stage of disease, age and presence of comorbidity. However, these treatments typically induce side effects, which generate currently ill-defined supportive care needs. This study examined the supportive care needs of men with prostate cancer within England. A postal questionnaire survey was conducted in six acute NHS Trusts. Seven hundred and forty-one men with prostate cancer participated. They had been diagnosed 3-24 months prior to the survey and had received various treatments. Men surveyed had specific and significant unmet supportive care needs. Areas of greatest need are related to psychological distress, sexuality-related issues and management of enduring lower urinary tract symptoms. High levels of psychological distress were reported, and those reporting psychological distress reported greater unmet supportive care needs. Unmet sexuality-related need was highest in younger men following radical prostatectomy. Lower urinary tract symptoms were almost universal in the sample. Perceived quality of life varied; men unsure of their remission status reported lowest quality of life. Psychological distress impacts significantly on perceived unmet need and is currently not being assessed or managed well in men living with prostate cancer in England.     

The prevalence and nature of supportive care needs in lung cancer patients

PurposeIn the present work, we set out to comprehensively describe the unmet supportive care and information needs of lung cancer patients.MethodsThis cross-sectional study used the Supportive Care Needs Survey Short Form 34 (34 items) and an informational needs survey (8 items). Patients with primary lung cancer in any phase of survivorship were included. Demographic data and treatment details were collected from the medical charts of participants. The unmet needs were determined overall and by domain. Univariable and multivariable regression analyses were performed to determine factors associated with greater unmet needs.ResultsFrom August 2013 to February 2014, 89 patients [44 (49%) men; median age: 71 years (range: 44–89 years)] were recruited. The mean number of unmet needs was 8 (range: 0–34), and 69 patients (78%) reported at least 1 unmet need. The need proportions by domain were 52% health system and information, 66% psychological, 58% physical, 24% patient care, and 20% sexuality. The top 2 unmet needs were “fears of the cancer spreading” [n = 44 of 84 (52%)] and “lack of energy/tiredness” [n = 42 of 88 (48%)]. On multivariable analysis, more advanced disease and higher MD Anderson Symptom Inventory scores were associated with increased unmet needs. Patients reported that the most desired information needs were those for information on managing symptoms such as fatigue (78%), shortness of breath (77%), and cough (63%).ConclusionsUnmet supportive care needs are common in lung cancer patients, with some patients experiencing a very high number of unmet needs. Further work is needed to develop resources to address those needs.     

The psychosocial needs of breast cancer survivors; a qualitative study of the shared and unique needs of younger versus older survivors

Due to improvements in medical treatment and survival following breast cancer, researchers have turned their attention to investigating the needs of breast cancer survivors. There is disagreement about the extent to which survivors continue to experience psychological morbidity after treatment ends. Whilst the majority of women adjust well to breast cancer, some may have continued psychosocial needs. Available research suggests that younger pre-menopausal women are at increased risk of psychological morbidity following breast cancer. The present study aimed to gather preliminary qualitative data on the psychosocial needs of breast cancer survivors and to identify the shared and unique needs of younger versus older survivors. A qualitative methodology was chosen as this was a relatively unexplored area of enquiry. Patients treated for early-stage breast cancer who had completed their hospital-based treatment 6-24 months prior to participation were recruited. Sampling was discontinued when informational redundancy was achieved. Eighteen telephone interviews were conducted. A wide variety of on-going psychosocial and information needs were reported by breast cancer survivors including support needs, psychological needs, practical needs, physical needs and information needs. Younger women reported more needs than their older counterparts. Several needs reported by younger women were directly related to being of younger age or pre-menopausal at the time of diagnosis. Clinical implications are discussed.     

Reports of information and support needs of daughters and sisters of women with breast cancer

The aim of this study was to describe the information and support needs of women who have primary relatives with breast cancer. The Information and Support Needs Questionnaire (ISNQ) was developed and revised from previous qualitative and pilot studies. The ISNQ addressed concepts of the importance of, and the degree to which, 29 information and support needs related to breast cancer had been met. The study sample consisted of 261 community-residing women who had mothers, sisters, or a mother and sister(s) with breast cancer. Data were collected using a mailed survey. In addition to the ISNQ, additional items addressed family and health history, breast self-care practices, perception of the impact of the relative's breast cancer and other variables. Also included were established and well-validated measures of anxiety and depression. The findings document women's priority information and support needs. The information need most frequently identified as very important was information about personal risk of breast cancer. Other highly rated needs addressed risk factors for breast cancer and early detection measures. Generally, the women perceived that their information and support needs were not well met. These findings illuminate needs of women for more information and support when they have close family relatives with breast cancer and opportunities for primary care providers to assist women in addressing their needs.