Transition to breast cancer survivorship: a longitudinal qualitative follow-up study of two-year survivors

This article reports on a qualitative, longitudinal follow-up of a cohort of breast cancer survivors through which their pretreatment psychological adjustment thought processes and behaviors were compared with those 2 years following diagnosis. Analysis revealed five interrelated themes reflecting changing thought processes and behaviors over time. Quantitative measures of psychological adjustment at 2 years were consistent with the qualitative findings in some respects; however, the concepts measured by these tools were inconsistent with themes identified through qualitative analysis. Findings support a need to study ways to assess women's psychosocial needs and intervene to support adjustment among 2-year breast cancer survivors.     

Long-term psychosocial adjustment of older vs younger survivors of breast and endometrial cancer

BACKGROUND: The study's objective was to test whether there were signfiicant differences in adjustment between younger and older breast and endometrial cancer survivors. METHODS: Two hundred and fifty-two breast and endometrial cancer survivors participated in this study, ranging in age from either 18 to 55 years old or 65 years old or older. Survivors were interviewed by telephone at study entry and 12 months, using a battery of measures to assess their adjustment, physical functioning, and treatment-related physical problems. RESULTS: With an average of 3.7 years since treatment completion, almost all survivors reported good adjustment to having had cancer. While most differences in psychosocial adjustment between groups were small, younger survivors reported significantly worse adaptation than older survivors, as measured by the Hospital Anxiety and Depression Scale (HADS, p<0.0001), Appearance-Orientation Scale (AOS, body image; p=0.02), Fear of Recurrence (p<0.0001), Distress about Long-term Treatment-Related Cancer Problems (p=0.01), and Number of Sexual Problems Attributed to Cancer (p<0.0001). CONCLUSION: Survivors reported few cancer-related problems with only a small subset reporting problems in adjustment. Although differences were small, younger cancer survivors reported significantly worse adaptation than older survivors. Much of the adaptation to having had cancer may have already occurred in long-term survivors.     

Health and supportive care needs of young adult cancer patients and survivors

PURPOSE A sizable body of literature exists for young adult survivors of childhood cancer but relatively little is known about the health and supportive care needs of older adolescent and young adult cancer survivors. This project assessed priority health and supportive care needs for young adult patients and off-treatment survivors. METHODS 1,088 cancer patients and off-treatment survivors (age 18–39, diagnosed between the ages of 15–35) rank ordered a series of health and supportive care needs. Item rank scores were calculated to prioritize lists of needs for patients receiving treatment and off-treatment survivors, respectively. Differences in rankings based on respondent age, age at diagnosis, years since diagnosis, gender and treatment status (currently receiving treatment or off-treatment) were examined. RESULTS Availability of state-of-the-art treatment specific to this age-group and having adequate health insurance were the most highly-ranked health care needs. Support from family and friends were the most highly ranked supportive care needs, although younger respondents attributed greater importance to support from family and friends. Older respondents attributed greater importance to availability of age-appropriate information, psychological counseling, and being responsible for one’s own health care and decision-making. Younger respondents reported significantly higher needs for fertility information and services and for scheduling treatments to fit their lifestyles. CONCLUSION Needs of adolescents and young adults with cancer vary along a continuum of care, from diagnosis and treatment through survivorship. Findings emphasize the value of age-appropriate resources and peer support. The study offers direction for delivering services to what previously has been an underserved population.     

Physical activity levels and supportive care needs for physical activity among breast cancer survivors with different psychosocial profiles: a cluster‐analytical approach

CHARLIER C., PAUWELS E., LECHNER L., SPITTAELS H., BOURGOIS J., DE BOURDEAUDHUIJ I. & VAN HOOF E. (2012) European Journal of Cancer Care Physical activity levels and supportive care needs for physical activity among breast cancer survivors with different psychosocial profiles: a cluster‐analytical approach The transition from breast cancer patient to survivor is associated with many treatment‐related and psychosocial factors, which can influence health behaviour and associated needs. First, this study aimed to identify clusters of treatment‐related and psychosocial factors among breast cancer survivors. Second, clusters' physical activity levels and care needs for physical activity were evaluated. Breast cancer survivors (n= 440; 52 ± 8 years) (3 weeks to 6 months post treatment) completed self‐reports on physical and psychological symptoms; illness representations; social support and coping; physical activity and care needs for physical activity. Analyses identified four clusters: (1) a low distress‐active approach group; (2) a low distress‐resigned approach group; (3) a high distress‐active approach group; and (4) a high distress‐emotional approach group. Physical activity levels were higher in the low distress groups than in the high distress‐emotional approach group. However, women with low distress and an active approach reported equal care needs for physical activity than women with high distress and an emotional approach. These findings suggest that care needs for physical activity are unrelated to distress and actual physical activity levels. The results emphasise the importance of screening for needs and provide a framework supporting the referral of breast cancer survivors to tailored interventions.     

Unmet psychosocial needs of Pennsylvanians with cancer: 1986-2005

BACKGROUND: The purpose of the current study was to identify unmet psychosocial needs of cancer survivors, understand the distribution of needs across subgroups, and compare unmet needs in 2005 with those identified by Houts et al. in 1986. METHODS: Using a sequential mixed methods design, qualitative interviews were conducted with 32 cancer survivors or family members to identify the psychosocial needs of people from the time of cancer diagnosis through survivorship. These data were used to modify a needs assessment that was mailed to a stratified random sample of survivors obtained from the Pennsylvania Cancer Registry. RESULTS: A total of 614 survivors returned usable questionnaires. Nearly two-thirds of respondents reported experiencing at least 1 unmet psychosocial need, particularly emotional, physical, and treatment-related needs. It is likely that unmet needs in insurance, employment, information, and home care increased during the 20-year interval between surveys. Demographics associated with increased unmet need included later stage of disease at the time of diagnosis, younger age, more comorbidities, and lower income. CONCLUSIONS: Unmet psychosocial need remains high despite 20 years of effort to address psychosocial issues. This may be due to a mismatch between needs and services. Unmet need may be related to access issues, a lack of awareness of resources, "new" needs that have arisen in a changing healthcare climate, and patient preferences for types of service. Cancer treatment staff should be especially alert for psychosocial problems in younger individuals with an additional illness burden.     

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.     

The fertility- and menopause-related information needs of younger women with a diagnosis of breast cancer: a qualitative study

The use of chemotherapy and endocrine therapies in the treatment of pre-menopausal women carries with it reproductive and gynaecological implications which younger women may find both unpleasant and discordant with plans for childbearing. This study aims to investigate the fertility- and menopause-related information needs of younger women with a diagnosis of early breast cancer. A retrospective qualitative methodology was chosen. Twenty-four women aged between 26 and 45 years at diagnosis participated in focus group interviews and telephone interviews. Many women thought that the information they had received in the past about fertility and menopausal symptoms was either insufficient or unavailable. Some women felt that, while information on fertility and menopause issues had not been paramount at the time of diagnosis, it became increasingly important after diagnosis. Participants spoke about the need to revisit or review fertility- and menopause-related information with their doctors during the course of treatment. Many women believed that information about fertility should be given prior to or during treatment decision-making, and that information related to the management of menopausal symptoms should be delivered during or after treatment when menopausal symptoms begin. Consultation with a fertility and/or menopause specialist-rated as the most preferred mode of receiving fertility- and menopause-related information. Clinical implications are drawn from the results of this study to assist clinicians and researchers to improve their communication with younger patients about the fertility- and menopause-related side effects of breast cancer treatment.     

Transition to Breast Cancer Survivorship: A Longitudinal Qualitative Follow-Up Study of Two-Year Survivors

This article reports on a qualitative, longitudinal follow-up of a cohort of breast cancer survivors through which their pretreatment psychological adjustment thought processes and behaviors were compared with those 2 years following diagnosis. Analysis revealed five interrelated themes reflecting changing thought processes and behaviors over time. Quantitative measures of psychological adjustment at 2 years were consistent with the qualitative findings in some respects; however, the concepts measured by these tools were inconsistent with themes identified through qualitative analysis. Findings support a need to study ways to assess women's psychosocial needs and intervene to support adjustment among 2-year breast cancer survivors.     

A qualitative study of the information needs of high-risk women undergoing prophylactic oophorectomy

This qualitative study sought to determine the information needs of high-risk pre-menopausal women who had undergone prophylactic bilateral oophorectomy to manage their inherited risk of ovarian cancer. In-depth interviews were carried out with 23 high-risk women following surgery. Although the benefit of risk reduction was perceived as out weighing the costs of surgery, many women reported that they would have liked more information about the physical and emotional after-effects of oophorectomy prior to and following surgery. The analysis identified five different types of information needed by women making surgical decisions, comprising information about ovarian function and the menopause, hormone replacement therapy (HRT), surgical procedures, convalescence and the risk of inheriting a genetic mutation and developing cancer. It is suggested that, in addition to genetic counselling for hereditary ovarian cancer, women should receive information about both the costs and benefits of prophylactic oophorectomy, and should have access to gynaecology nurse specialists both before and after surgery.     

Psychosocial concerns of young African American breast cancer survivors

Thirty-three African American breast cancer survivors age 45 or younger participated in semistructured phone interviews about psychosocial concerns. Twenty-six percent believed treatment interfered with employment. One third wanted additional emotional support at and after diagnosis. One half felt cancer negatively influenced romantic relationships. Forty-five percent wanted children at diagnosis, but one half these women never received fertility information. One third reported sexual problems, but 73% never discussed sexuality with providers. Fifty-two percent lacked information about cancer-related sexual dysfunction. The strength and spirituality of African American women may facilitate cancer adjustment, but cultural taboos surrounding women's health issues may interfere with successful coping.     

Weight control needs and experiences among rural breast cancer survivors

Objective: Rural women are understudied in research on weight control among breast cancer survivors despite having higher obesity rates than their urban counterparts placing them at higher risk for recurrence. The purpose of this survey study was to describe weight status and methods used for weight control in rural breast cancer survivors and to examine psychosocial factors in this population associated with weight change since breast cancer diagnosis. Methods: Women treated for breast cancer within the past 6 years at one of three rural Cancer Centers were mailed a survey with a cover letter from their oncology provider. Results: Survey respondents (n=918, 83% response rate) were 96% White non‐Hispanic, on average 3.2 years from treatment, and 11% reported metastatic disease. Among respondents without known metastatic disease, 68% were overweight or obese, 37% were obese, and 25% reported a weight gain exceeding 5 kg since diagnosis. Among the overweight/obese women, 61% were currently attempting weight loss, and the most common weight loss method was dieting on one's own without assistance. Psychosocial factors associated with weight gain since diagnosis included depression, fear of cancer recurrence, diminished physical strength, body image concerns, relationship changes, and financial stressors. Conclusions: The high response rate indicates a general interest in body weight issues among rural BrCa survivors, and the findings highlight the need for weight control programs in this population. Findings also indicate that factors related to poor adjustment to breast cancer are associated with weight gain among rural women. Copyright © 2010 John Wiley & Sons, Ltd.     

After cancer: the unmet supportive care needs of survivors and their partners

Cancer patients and their partners experience elevated distress and unmet supportive care needs at the time of treatment, however, their ongoing needs have not been adequately described. This qualitative study explores the needs of disease-free cancer survivors and their partners using semi-structured telephone interviews. A convenience sample of 25 key informants' identified needs in the domains of information, health care, physical functioning, relationships, emotions, socio-economic issues, expectations and life perspective; and the positive outcomes are widely reported. The identification of unique needs of survivors and partners supports the development of supportive care measures to specifically assess ongoing care need in these populations.     

Perceptions of cancer-related information among cancer survivors: a report from the American Cancer Society's Studies of Cancer Survivors

BACKGROUND.: Sources of cancer-related information are rapidly increasing, but little is known about whether the health information available to cancer survivors meets their needs. METHODS.: The authors surveyed 778 Massachusetts cancer survivors 3, 6, or 11 years after their diagnosis for 6 common cancers. They analyzed their views about 5 types of cancer-related information, the quality of that information, barriers to getting it, their experiences with physicians providing cancer care, and the quality of their cancer care. RESULTS.: Among 462 (61%) respondents who reported needing cancer information, many gave unfavorable ratings (fair or poor) of the quality of cancer information regarding cancer support groups (38%), long-term side effects (36%), experiences of other cancer patients (26%), and cancer physicians (26%). About 20% of respondents reported sometimes experiencing barriers to obtaining cancer information, although fewer than 10% usually or always experienced barriers. For both men and women, worse physical and mental functioning was associated with greater need for information, worse ratings of information quality, and more barriers to obtaining information (all P<.01). Cancer survivors who were black or had lower incomes reported more problems obtaining needed information, and younger women had greater information needs than older women (all P <.01). CONCLUSIONS.: Opportunities exist to improve the quality, content and delivery of cancer-related information to survivors, especially for those who are racial/ethnic minorities, have low incomes, or are in worse physical or mental health. Providing information more effectively to cancer survivors may improve their care and health outcomes. Cancer 2008. (c) 2008 American Cancer Society.     

Perceptions of changes in weight among African American breast cancer survivors

BACK GROUND: Although African American breast cancer survivors are most likely to gain weight following diagnosis and treatment compared to women from other ethnic groups, limited information is available on psychological and behavioral reactions to weight change in this population. OBJECTIVES: To explore perceptions and reactions to weight change in African American breast cancer survivors. METHODOLOGY: A parallel mixed methods approach was used to explore experiences with and reactions to weight change following breast cancer diagnosis and treatment. Participants were 16 short- and long-term African American breast cancer survivors. RESULTS: Nine out of 16 participants gained weight following diagnosis and treatment and most participants were concerned about these changes. Most participants were also interested in diet and exercise programs; however, a holistic and common sense approach to diet and physical activity emerged as key themes. CONCLUSIONS: Although prior reports have found that African American women in the general population report a greater tolerance for larger body sizes, most participants in this study were concerned about changes in their weight and were actively trying to minimize weight gain. Several themes emerged regarding physical activity and dietary behaviors; overall, participants described a holistic and practical approach to these behaviors.     

Health-related quality of life and health care utilisation among older long-term cancer survivors: a population-based study

BackgroundThe consequences of cancer and its treatment on health-related quality of life (HRQL) and health care utilisation among elderly long-term cancer survivors have rarely been studied. However, the impact can be different for older compared to younger patients due to the higher prevalence of comorbid diseases, a higher risk of treatment-related complications and because they often receive different therapies compared to younger patients. Therefore, this study addressed the following questions; do HRQL and health care utilisation differ between younger and elderly cancer survivors, and are those differences age or disease related.MethodsA population-based, cross-sectional survey among 1893 long-term survivors of endometrial cancer, prostate cancer and non-Hodgkin’s lymphoma was conducted using a cancer registry. HRQL was measured by the SF-36 and health care utilisation was measured with a self-reported questionnaire. Results were compared to a normative population. Patients with disease progression were excluded resulting in a total number of 1112 patients to be analysed.ResultsYoung non-Hodgkin lymphoma survivors (<70 years) reported lower vitality, bodily pain and general health compared to the normative population while older (⩾70 years) survivors did not differ from the norm. Young lymphoma survivors experienced better physical functioning compared to older survivors. Young endometrial cancer survivors experienced less bodily pain compared to the normative population while older survivors did not differ from the norm. Young endometrial cancer survivors experienced better physical and role functioning compared to older survivors. Young prostate cancer survivors reported less bodily pain compared to the norm while older survivors did not. Young prostate cancer survivors reported higher scores on physical functioning compared to older survivors. Age, comorbid diseases, educational level and current occupation influenced HRQL significantly. Both younger and older cancer survivors visited their medical specialist, but not their GP, significantly more often compared to the age-matched general Dutch population. Both younger and older cancer survivors only sporadically used additional care services after cancer treatment.DiscussionHRQL of older and younger survivors is comparable, with the exception of physical functioning which is lower in older survivors. This difference in physical functioning was probably not caused by cancer because physical functioning among cancer survivors did not differ much compared to an age-matched normative population. Both younger and older long-term cancer survivors visited their medical specialist often but only sporadically used additional care services after cancer treatment.     

Follow-up care of breast cancer survivors

Breast cancer survivors may have several medical and psychosocial concerns in follow-up care. Women with a history of breast cancer should be followed for local-regional recurrence or metastatic disease, as well as for the development of a second primary breast cancer in the contralateral breast. Regular follow-up visits can foster an ongoing patient-clinician relationship both to ensure adequate surveillance and so that symptoms of recurrence or complications of therapy will be reported by the patient and addressed promptly. There are multiple possible long-term complications that may arise following breast cancer treatment, many of which may be ameliorated with various therapies. Clinicians can also provide guidance and counseling as well as psychosocial support to patients regarding medical and psychosocial decisions that may be affected by their personal history of breast cancer.