Does quality of life among breast cancer survivors one year after diagnosis differ depending on urban and non-urban residence? A comparative study

Background: This study examined the quality of life (QOL), measured by the Functional Assessment of Cancer Therapy (FACT) questionnaire, among urban (n=277) and non-urban (n=323) breast cancer survivors and women from the general population (n=1140) in Queensland, Australia. ----------\ud Methods: Population-based samples of breast cancer survivors aged <75 years who were 12 months post-diagnosis and similarly-aged women from the general population were recruited between 2002 and 2007. ----------\ud Results: Age-adjusted QOL among urban and non-urban breast cancer survivors was similar, although QOL related to breast cancer concerns was the weakest domain and was lower among non-urban survivors than their urban counterparts (36.8 versus 40.4, P<0.01). Irrespective of residence, breast cancer survivors, on average, reported comparable scores on most QOL scales as their general population peers, although physical well-being was significantly lower among non-urban survivors (versus the general population, P<0.01). Overall, around 20%-33% of survivors experienced lower QOL than peers without the disease. The odds of reporting QOL below normative levels were increased more than two-fold for those who experienced complications following surgery, reported upper-body problems, had higher perceived stress levels and/or a poor perception of handling stress (P<0.01 for all). ----------\ud Conclusions: Results can be used to identify subgroups of women at risk of low QOL and to inform components of tailored recovery interventions to optimize QOL for these women following cancer treatment

Patients’ experiences of vulvar cancer diagnosis and treatment: results from a consumer-guided qualitative study

Background:Despite increased attention for the use of sentinel node biopsy (SNB) for the management of vulvar cancer as a less invasive technique compared with lymph node dissection (LND), patient views on this technique are unknown. This study explored patients’ experiences of being diagnosed and treated for vulvar cancer and to enhance our understanding of the patient view of SNB.Methods:Ten women who had received surgery (with or without lymph node removal) for vulvar cancer in the previous five years participated in a semi-structured qualitative interview in 2022. A consumer-led research group guided thematic analysis of the data.Results:Ten women were interviewed ranging in age (41–82 years). Treatment included either lymph node removal during initial surgery (n = 4), or following a routine scan identifying a change (n = 2); four vulvar cancer patients were being monitored with ultrasound at the time of the interview. Five main themes were identified: (1) difficult diagnostic experiences; (2) lack of support and information; (3) challenges with treatment decision-making; (4) patients’ perspectives of LND and SNB with monitoring; (5) trauma of treatment.Conclusions:SNB seems acceptable to patients and potentially offers a less invasive alternative to standard treatment, which should be further investigated

Exercise for health: a randomized, controlled trial evaluating the impact of a pragmatic, translational exercise intervention on the quality of life, function and treatment-related side effects following breast cancer

Exercise for Health was a randomized, controlled trial designed to evaluate two modes of delivering (face-to-face [FtF] and over-the-telephone [Tel]) an 8-month translational exercise intervention, commencing 6-weeks post-breast cancer surgery (PS). Outcomes included quality of life (QoL), function (fitness and upper body) and treatment-related side effects (fatigue, lymphoedema, body mass index, menopausal symptoms, anxiety, depression and pain). Generalised estimating equation modelling determined time (baseline [5 weeks PS], mid-intervention [6 months PS], post-intervention [12 months PS]), group (FtF, Tel, Usual Care [UC]) and time-by-group effects. 194 women representative of the breast cancer population were randomised to the FtF (n = 67), Tel (n = 67) and UC (n = 60) groups. There were significant (p < 0.05) interaction effects on QoL, fitness and fatigue with differences being observed between the treatment groups and the UC group. Trends observed for the treatment groups were similar. The treatment groups reported improved QoL, fitness and fatigue over time and changes observed between baseline and post-intervention were clinically relevant. In contrast, the UC group experienced no change, or worsening QoL, fitness and fatigue, mid-intervention. Although improvements in the UC group occurred by 12-months post-surgery, the change did not meet the clinically relevant threshold. There were no differences in other treatment-related side effects between groups. This translational intervention trial, delivered either FtF or Tel, supports exercise as a form of adjuvant breast cancer therapy that can prevent declines in fitness and function during treatment and optimise recovery post-treatment

Health-related quality of life among breast cancer survivors : town and country experiences

Due to advances in detection and treatment, increasing numbers of women are diagnosed with, and surviving, breast cancer each year, making women with breast cancer one of the largest groups of cancer survivors. Hence, ensuring good healthrelated quality of life (HRQoL) following treatment has become a focal point of cancer research and clinical interest. While our understanding about the impact of breast cancer is improving, little is known about the HRQoL among survivors in non-urban areas. This is important locally, as 45% of breast cancer survivors in Queensland, Australia, live outside major metropolitan areas. Therefore, this study investigated the HRQoL and accompanying correlates among regional and rural breast cancer survivors, and made comparisons with urban breast cancer survivors as well as women from the general population without a history of breast cancer. Three population-based studies comprise this project. Original data were collected by way of self-administered questionnaire from 323 women, diagnosed with a first, primary, invasive, unilateral breast cancer during 2006/2007 and residing in regional or rural areas of Queensland, 12 months following diagnosis. HRQoL was assessed using the Functional Assessment of Cancer Therapy, Breast plus additional concerns (FACT-B+4) questionnaire. Data from two existing data sources were also utilised. Women diagnosed with a first, primary, invasive, unilateral breast cancer in 2002 and residing within 100kms of Brisbane provided information on HRQoL, measured by the FACT-B+4, via self-administered questionnaire at six (n=287), 12 (n=277) and 18 (n=272) months post-diagnosis. Data at 12 months post-diagnosis was utilised for comparison with region and rural women with breast cancer. General population data for HRQoL, collected by self-administered questionnaire in 2004 using the Functional Assessment of Cancer Therapy-General (FACT-G) questionnaire, were derived from a subgroup of female residents without a history of breast cancer from urban (n=675), regional (n=184) and rural (n=281) Queensland. The two studies involving women with breast cancer were recruited sequentially through the Queensland Cancer Registry, whereas the study involving the general population used telephone survey methods initially to identify participants. Women who participated in all studies were aged between 30 and 74 years. Raw scores for overall HRQoL (FACT-B+4, FACT-G) and subscales were computed. According to developers of the instrument, raw score differences of eight points between groups on the FACT-B+4 scale and five points on the FACT-G scale reflect a clinically meaningful differences in HRQoL. Age-adjusted, mean HRQoL was similar between regional and rural women with breast cancer 12 months following diagnosis (e.g., FACT-B+4: 122.9 versus 123.7, respectively, p=0.74). However, younger regional and rural survivors reported lower HRQoL scores compared with their older counterparts (e.g., FACT-B+4: 112.0 and 115.8 versus 129.3 and 126.2, respectively, p<0.05 for all). In addition to age, other important correlates of lower overall HRQoL (FACT-B+4) among regional/rural breast cancer survivors included: receiving chemotherapy, reporting complications post-surgery, poorer upper-body function than most, higher amounts of stress, reduced coping, being socially isolated, not having a confidante for social-emotional support, unmet healthcare needs, and low self-efficacy. Multiple linear regression analysis was used to address the hypothesis regarding similarity of HRQoL following breast cancer among women residing in regional and rural locations. After adjusting for the above factors, there was no statistically significant or clinically important difference in overall HRQoL (FACT-B+4) between regional and rural women with breast cancer 12 months following diagnosis (122.1 versus 125.1, respectively, p=0.07). Data from regional and rural women were pooled, based on the above analyses, and compared with urban women. Multiple linear regression analysis was used to test the hypothesis that HRQoL following breast cancer among women residing in regional/rural locations would be lower than that reported by women residing in urban locations. Potential confounders of the association between overall HRQoL (FACT-B+4) and place of residence included: marital status, upper-body function, amount of stress and perceived handling of stress. After adjusting for factors that differed between urban and regional/rural survivors, overall HRQoL (FACT-B+4) was lower among younger regional/rural survivors than their urban peers, and the findings were both statistically significant and clinically important (115.3 versus 123.7, respectively, p=0.001). Older women reported similar mean HRQoL, regardless of regional/rural or urban residence (128.2 versus 131.6, respectively, p=0.03). Further multiple linear regression analyses were undertaken to investigate whether women with breast cancer would report HRQoL equivalent to that reported by similarly-aged women in the general population. After adjusting for potential confounding factors that are known or suspected risk factors for breast cancer (age, marital status, education level, private health insurance, smoking status, physical activity, body mass index, co-morbidities), overall HRQoL (FACT-G) among breast cancer survivors was comparable to the general population 12 months following diagnosis (urban: 88.0 versus 86.9, respectively, p=0.28; regional/rural: 86.2 versus 85.8, respectively, p=0.79). However, 26% of survivors experienced worse overall HRQoL (FACT-G) compared with normative levels. HRQoL subscales contributing most to this deficit were physical well-being, with 29% of breast cancer survivors reporting scores below the norm, and emotional well-being among younger women, with 46% reporting scores below the norm. Logistic regression analysis was used to identify subgroups of breast cancer survivors who reported HRQoL below normative levels; reporting poorer upper-body function than most and not handling stress well increased the odds of reporting overall HRQoL (FACT-G: odds ratios (ORs) = 4.44 and 4.24, respectively, p<0.01 for both), physical well-being (ORs = 5.93 and 2.92, respectively, p<0.01 for both) and emotional well-being (among younger women: ORs = 2.81 and 5.90, respectively, p<0.01 for both) below normative levels. The cross-sectional nature of the study design for regional and rural breast cancer survivors, and the potential selection and response biases in all three studies, represent the main limitations of this work. The cross-sectional design precludes causal inference about observed associations, but even characterising relevant correlates allows for adjustment of potential confounding and provides insight into factors that may be important in contributing to HRQoL among breast cancer survivors. Moreover, the potential impact of the latter limitations is in the conservative direction, whereby differences in HRQoL between groups will be more difficult to identify. Since these biases are expected to be present to a similar degree across all study groups, the absolute difference in HRQoL by residence and cancer status observed are likely to exist. In contrast, the work is supported by a population based, state-wide sample of breast cancer survivors, comparisons with the general population, and use of standardised instruments. Therefore, the conclusions derived from this research are likely to be generalisable to the wider population of women in Queensland with unilateral breast cancer, aged 74 years or younger, and perhaps to similar women in other western countries, depending on variations in healthcare systems and the provision of oncology services. This research supports the initial supposition that while some findings may generalise to all breast cancer survivors, non-urban breast cancer survivors also have distinct experiences that influence their HRQoL. Results from this work highlight the HRQoL domains and characteristics of breast cancer survivors most in need of assistance to facilitate recovery following diagnosis and treatment. Characteristics include some already established and reconfirmed here, namely, emotional wellbeing among younger women, and other novel subgroups, including regional/rural survivors who receive chemotherapy or have a low self-efficacy and all survivors, regardless of residence, with upper-body problems or a low perception of handling stress. These results demonstrate the potential for identifying subgroups of women with breast cancer at risk for low HRQoL who may benefit from additional attention and possible tailored recovery interventions to increase their overall HRQoL. As such, researchers and clinicians need to consider the role of these factors when designing interventions to assist women as they deal with the challenges imposed upon them by their breast cancer. However, it was found here that the FACT-G instrument has ceiling effects. This means that positive changes reflecting improved status, such as those achieved through recovery interventions, will often fail to be measured appropriately if there is no room to indicate improvements. Overall HRQoL results indicated that there is room for improvement past 12 months following treatment, with a significant proportion of breast cancer survivors reporting HRQoL below normative levels. HRQoL concerns 12 months following diagnosis are likely to be distinct from the more acute issues reported earlier on in the literature. Therefore, the development of a cancer survivorship module to accompany the FACT-G would be useful to counteract the ceiling effects observed as well as to capture issues distinct to cancer survivorship. This is the first study to describe in detail the HRQoL of breast cancer survivors across all areas of Queensland and to compare it to the HRQoL reported by the general population of Queensland. Therefore, it represents a unique and substantial contribution to the existing knowledge on survivorship issues following diagnosis and treatment for breast cancer in Australia. Through this research, a number of questions remain that could be addressed by relevant investigations and which are likely to be important in the future to ultimately guide practice. Specifically, implementation of the concept of HRQoL in practice is the next important step forward. Furthermore, the development of a survivorship care plan that incorporates guidelines on HRQoL recovery could provide options for referral and support

Upper-body morbidity following breast cancer treatment is common, may persist to longer-term and adversely influences quality of life

Background: Impairments in upper-body function (UBF) are common following breast cancer. However, the relationship between arm morbidity and quality of life (QoL) remains unclear. This investigation uses longitudinal data to describe UBF in a population-based sample of women with breast cancer and examines its relationship with QoL. ---------- Methods: Australian women (n = 287) with unilateral breast cancer were assessed at three-monthly intervals, from six- to 18-months post-surgery (PS). Strength, endurance and flexibility were used to assess objective UBF, while the Disability of the Arm, Shoulder and Hand questionnaire and the Functional Assessment of Cancer Therapy- Breast questionnaire were used to assess self-reported UBF and QoL, respectively. ---------- Results: Although mean UBF improved over time, up to 41% of women revealed declines in UBF between sixand 18-months PS. Older age, lower socioeconomic position, treatment on the dominant side, mastectomy, more extensive lymph node removal and having lymphoedema each increased odds of declines in UBF by at least twofold (p < 0.05). Lower baseline and declines in perceived UBF between six- and 18-months PS were each associated with poorer QoL at 18-months PS (p < 0.05). ---------- Conclusions: Significant upper-body morbidity is experienced by many following breast cancer treatment, persisting longer term, and adversely influencing the QoL of breast cancer survivors

The Lymphedema Evaluation in Gynecological cancer Study (LEGS): design of a prospective, longitudinal, cohort study

Background The Lymphoedema Evaluation in Gynecological cancer Study (LEGS) was a longitudinal, observational, cohort study prospectively evaluating the incidence and risk factors of lower-limb lymphedema after treatment for gynecological cancer. Here we describe the study protocol and characteristics of the sample. Methods Women with a newly diagnosed gynecological cancer between June 1, 2008 and February 28, 2011, aged 18 years or older, and treated at one of six hospitals in Queensland, Australia, were eligible. Lymphedema was assessed by circumference measurements, bioimpedance spectroscopy, and self-reported swelling. LEGS incorporated a cohort of patients requiring surgery for benign gynecological conditions for comparison purposes. Data were collected prior to surgery and at regular intervals thereafter up to 2-years post-diagnosis. Results 546 women participated (408 cancer, 138 benign), with a 24-month retention rate of 78%. Clinical and treatment characteristics of participants were similar to the Queensland gynecological cancer population, except for a higher proportion of early-stage cervical cancers recruited to LEGS compared with Queensland proportions (89% versus 55%, respectively). Discussion Few imbalances were observed between participants with complete and incomplete follow-up data. The prospective design and collection of objective and patient-reported outcome data will allow comprehensive assessment of incidence and risk factors of lower-limb lymphedema

Survivorship research in advanced gynecological cancer: A scoping review of cohort studies

Abstract Background Recent calls to action highlight the need to address gaps in our understanding of survivorship for those living with advanced gynecological cancer to support optimal care. To ensure future research fills these knowledge gaps, we need to understand the breadth of existing survivorship research in this patient group, including the outcomes assessed, the populations included and the duration and retention in follow‐up. Methods We conducted a systematic scoping review searching PubMed, PsychINFO, and CINAHL during the month of November 2022 to identify prospective cohort studies measuring survivorship outcomes among participants with advanced (stage III–IV) gynecological cancer, or in cohorts in which ≥50% of participants had advanced cancer, or which provide results separately for patients with advanced cancer. Articles were screened, and data extracted using a standard form. Results We assessed 33 articles from 21 unique studies, which overall included 6023 participants with gynecological cancer. Of these, 45% had cervical cancer, 44% ovarian, 10% endometrial/uterine, and 1% vaginal/vulvar cancer. The most frequently measured survivorship outcome was quality of life. Of the 33 articles, most reported on participant age (n = 31), but relatively few reported on comorbidities (n = 10), physical status (n = 6), ethnic background (n = 4), the country of birth (n = 2), or the area of participant residence (n = 2). None included details on indigenous status. Recruitment proportions ranged from 48% to 100%. Retention proportions ranged from 15% to 97%. Conclusion Our findings highlight gaps in survivorship research for advanced gynecological cancers and emphasize the need for future studies to include and describe the experiences of diverse and underrepresented groups

A systematic review of vaginal and vulvar cancer guidelines: prevention to diagnosis

Vaginal cancer and vulvar cancer are rare female gynaecological cancers. Guidelines ensure that all people diagnosed with vaginal or vulvar cancer receive the best healthcare and to improve patient outcomes. This proposal aims to systematically identify guidelines that are relevant to vaginal and vulvar cancers, including evidence-based guidelines and expert consensus statements. This systematic review will focus on the first three stages of the cancer continuum as presented in OCPs including prevention and early detection; presentation, initial investigations and referral; and diagnosis. The topic of cancer treatment and beyond are outside the scope of this systematic review