Cancer survivors who fully participate in the PROFILES registry have better health-related quality of life than those who drop out

Abstract

Purpose

Attrition and subsequent missing data pose a challenge in longitudinal research in oncology. This study examined factors associated with attrition in the PROFILES registry, and its impact on observed health-related quality of life (HRQOL) estimates.

Methods

Sociodemographic, clinical, and HRQOL data were collected annually from a cohort of 2625 colorectal cancer survivors between 2010 and 2015. Participant characteristics according to time of dropout were compared using analysis of variance and chi-square tests. Predictors of attrition were examined in logistic regression analysis. Multilevel linear mixed models were constructed to investigate associations between attrition and HRQOL over time.

Results

Participants who dropped out were more likely to be female (OR = 1.23, CI = 1.02–1.47), older (OR = 1.20, CI = 1.09–1.33), less educated (OR = 1.64, CI = 1.30–2.11), and to have depressive symptoms (OR = 1.84, CI = 1.39–2.44) than full responders, and less likely to have high socioeconomic status (OR = 0.74, CI = 0.61–0.94). Participants who dropped out earlier reported significantly worse HRQOL, functioning, and psychosocial symptoms, which declined at a steeper rate over time, than full responders.

Conclusions

Cancer survivors’ HRQOL may be overestimated in longitudinal research due to attrition of the most unwell participants.

Implications for Cancer Survivors

Cancer survivors with the poorest health are at risk of dropping out of PROFILES and possibly withdrawing from other activities. Optimizing participation in PROFILES—a potential mechanism for providing information and access to support—is an avenue for keeping this group engaged.

Supportive care needs of patients following treatment for colorectal cancer: risk factors for unmet needs and the association between unmet needs and health-related quality of life—results from the ColoREctal Wellbeing (CREW) study

Abstract

Purpose

To investigate unmet needs of patients with colorectal cancer (CRC) at the end of treatment and whether unmet needs improve over time. Identify predictors of need following treatment and whether unmet need is associated with worse health-related quality of life (HRQoL).

Methods

As part of the UK ColoREctal Wellbeing (CREW) cohort study, patients treated for CRC completed the Supportive Care Needs Survey Short Form-34 (SCNS SF-34) 15 and 24 months following surgery, along with questionnaires measuring HRQoL, wellbeing, life events, social support, and confidence to manage their cancer before surgery, 3, 9, 15, and 24 months post-surgery.

Results

The SCNS SF-34 was completed by 526 patients at 15 months and 510 patients at 24 months. About one-quarter of patients had at least one moderate or severe unmet need at both time points. Psychological and physical unmet needs were the most common and did not improve over time. Over 60% of patients who reported 5 or more moderate or severe unmet needs at 15 months experienced the same level of unmet need at 24 months. HRQoL at the beginning of treatment predicted unmet needs at the end of treatment. Unmet needs, specifically physical, psychological, and health system and information needs, were associated with poorer health and HRQoL at the end of treatment.

Conclusions

Unmet needs persist over time and are associated with HRQoL. Evaluation of HRQoL at the start of treatment would help inform the identification of vulnerable patients. Assessment and care planning in response to unmet needs should be integrated into person-centred care.

Implications for Cancer Survivors

Early identification of CRC patients at risk of unmet needs will help infrom personalised survivorship care plans. The implementation of personalised and tailored services are likely to confer HRQoL gains.

Colorectal cancer survivors only marginally change their overall lifestyle in the first 2 years following diagnosis

Abstract

Purpose

A healthy lifestyle after colorectal cancer (CRC) diagnosis may improve prognosis. Data related to lifestyle change in CRC survivors are inconsistent and potential interrelated changes are unknown.

Methods

We assessed dietary intake, physical activity, body mass index (BMI), waist circumference, and smoking among 1072 patients diagnosed with stages I–III CRC at diagnosis, 6 months and 2 years post-diagnosis. An overall lifestyle score was constructed based on the 2018 World Cancer Research Fund/American Institute of Cancer Research recommendations (range 0–7). We used linear mixed models to analyze changes in lifestyle over time.

Results

Participants had a mean (± SD) age of 65 ± 9 years and 43% had stage III disease. In the 2 years following CRC diagnosis, largest changes were noted for sugary drinks (− 45 g/day) and red and processed meat intake (− 62 g/week). BMI (+ 0.4 kg/m²), waist circumference (+ 2 cm), and dietary fiber intake (− 1 g/day) changed slightly. CRC survivors did not statistically significant change their mean intake of fruits and vegetables, alcohol, or ultra-processed foods nor did they change their physical activity or smoking behavior. Half of participants made simultaneous changes that resulted in improved concordance with one component as well as deteriorated concordance with another component of the lifestyle score. Overall lifestyle score changed from a mean 3.4 ± 0.9 at diagnosis to 3.5 ± 0.9 2 years post-diagnosis.

Conclusions

CRC survivors hardly improve their overall lifestyle after diagnosis.

Implications for Cancer Survivors

Given the importance of a healthy lifestyle, strategies to effectively support behavior changes in CRC survivors need to be identified.

Social attainment in survivors of pediatric central nervous system tumors: a systematic review and meta-analysis from the Children’s Oncology Group

Abstract

Purpose

Improved therapies for pediatric central nervous system (CNS) tumors have increased survival rates; however, many survivors experience significant long-term functional limitations. Survivors of pediatric CNS tumors can experience deficits in social attainment. The aim of this review was to systematically amalgamate findings pertaining to social attainment (i.e., educational attainment, marriage, employment outcomes) in survivors of pediatric CNS tumors.

Methods

PubMed (web-based), PsycINFO (EBSCO), EMBASE (Ovid), and Web of Science (Thomson Reuters) were used to identify articles published between January 2011 and September 2018. Eligible studies reported outcomes for survivors of pediatric CNS tumors diagnosed before age 21 years and > 5 years from diagnosis and/or > 2 years off therapy. All data were independently abstracted by two reviewers. Random-effects meta-analyses were performed using Review Manager 5.0.

Results

The search yielded 7021 unique publications. Forty-six were included in the current review. Meta-analyses revealed survivors of CNS tumors were significantly more likely to have completed compulsory education only (OR = 1.87, 95% CI = 1.66, 2.12, p < 0.00001), less likely to be married (OR = 4.70, 95% CI = 3.89, 5.68, p < 0.00001), and more likely to be unemployed (OR = 2.84, 95% CI = 2.62, 3.08, p < 0.00001) compared to non-cancer controls. Cranial radiation therapy, neurocognitive deficits, and younger age at diagnosis were associated with poorer outcomes. Hearing loss and bilateral blindness were also related to poorer outcomes. Sex did not impact social attainment outcomes.

Conclusions

Survivors of pediatric CNS tumors are at elevated risk for poor attainment of key adult social outcomes.

Implications for Cancer Survivors

There is a critical need to develop interventions to support survivors in becoming independent and productive adults.

A meta-review of qualitative research on adult cancer survivors: current strengths and evidence gaps

Abstract

Purpose

The number of qualitative studies exploring cancer survivor experiences has significantly increased in recent years, with a large number of systematic reviews now published. This meta-review (systematic review of systematic reviews) aimed to assess the evidence base—summarising existing qualitative findings and identifying gaps for further research.

Methods

Systematic reviews published from 1950 to 2018 were identified via database searches (MEDLINE, Embase, CINAHL, PsycINFO). Two authors assessed eligibility and extracted data. Review quality was assessed using the JBI Critical Appraisal Checklist for Systematic Reviews.

Results

A total of 1465 titles were retrieved, and 60 reviews were included in the final review. All included reviews were conducted between 1998 and 2018. Whilst many reviews included mixed cancer types (21), the majority included only one cancer type (breast (19), gynaecological (10), prostate (5), haematological (2), colorectal (1), bladder (1) and melanoma (1)). Reviews focused on several survivorship topic areas including quality of life, experiences of survivors from ethnic minorities, returning to work and experiences of survivorship healthcare services. Less frequently reviewed topics included fertility, body image, coping strategies and spirituality.

Conclusions

This meta-review provides insight into the areas of research density and paucity. Breast and gynaecological cancer survivors are strongly represented. Gaps in synthesis include reviews for other common cancers (e.g. lung, colorectal, melanoma, haematological) as well as survivorship topic areas such as side/late effects, psychological issues, financial toxicity and health behaviours.

Implications for Cancer Survivors

Qualitative research into cancer survivor experiences can guide intervention development, as well as provide survivors with insight into the experiences and challenges faced by others with cancer.

Posttraumatic stress as a contributor to behavioral health outcomes and healthcare utilization in adult survivors of childhood cancer: a report from the Childhood Cancer Survivor Study

Abstract

Purpose

To examine the association between posttraumatic stress symptoms (PTSS), neurocognitive and psychosocial late-effects, health behaviors, and healthcare utilization in long-term survivors of childhood cancer.

Methods

Participants included individuals (N = 6844; 52.5% female; mean [SD] age at diagnosis = 7.6 [5.8], at follow-up = 34.9 [7.5]) in the Childhood Cancer Survivor Study (CCSS). Follow-up included the Posttraumatic Stress Scale, Brief Symptom Inventory-18, Short-form 36 Health-related quality of life (HRQOL) survey, CCSS Neurocognitive Questionnaire, and questions about sociodemographics, physical health, health behaviors, and healthcare utilization. Modified Poisson regression and multinomial logistic regression models examined associations between posttraumatic stress symptoms (PTSS) and neurocognitive, HRQOL, health behavior, and healthcare outcomes when adjusting for sociodemographics, disease, and treatment.

Results

Long-term survivors with PTSS (N = 995, 14.5%) reported more impairment in mental (relative risk [RR] 3.42, 95% confidence interval [CI] 3.05–3.85), and physical (RR = 2.26, CI = 1.96–2.61) HRQOL. PTSS was also associated with increased impairment in task efficiency (RR = 3.09, CI = 2.72–3.51), working memory (RR = 2.55, CI = 2.30–2.83), organization (RR = 2.11, CI = 1.78–2.50), and emotional regulation (RR = 3.67, CI = 3.30–4.09). Survivors with PTSS were significantly more likely to attend cancer-specific health visits in the past 2 years (OR = 1.89, CI = 1.50–2.39), and showed greater likelihood of either high frequency (OR = 1.89, CI = 1.50–2.39) or complete lack of (OR = 1.63, CI = 1.32–2.01) primary care visits compared to survivors without PTSS.

Conclusions

Survivors with PTSS reported significantly more psychosocial and neurocognitive late effects, and were more likely to engage in variable use of healthcare.

Implications for Cancer Survivors

PTSS is associated with additional challenges for a population vulnerable to adverse late effects. Inclusion of integrative services during follow-up visits may benefit functional outcomes.

Influenza vaccination in caregivers of childhood cancer survivors

Abstract

Purpose

An increased risk of influenza-related morbidity and mortality in childhood cancer survivors could be significantly reduced through vaccinations. This study aimed to examine influenza vaccination practices by caregivers of childhood cancer survivors.

Methods

Study subjects were 364 caregivers, recruited at three major hospitals in South Korea. We collected demographic and medical information through self-administered questionnaires, along with clinical information of childhood cancer survivors by reviewing medical records. Multiple logistic regression analysis was performed to analyze factors associated with influenza vaccination of caregivers.

Results

A total of 55.2% of caregivers had received influenza vaccination at least once and 24.2% had received yearly influenza vaccinations during the last 3 years. Caregivers with highest education level were more likely to receive influenza vaccination than caregivers with lowest education level: aOR (95% CI) was 3.42 (1.17, 9.99) for ever-receipt of vaccination and 3.33 (1.15, 9.58) for yearly vaccination. One-year increase in caregiver age was inversely associated with ever-receipt of vaccination (aOR (95% CI), 0.94 (0.90, 0.98)) as well as yearly vaccination (aOR (95% CI), 0.92 (0.88, 0.97)). Increasing time lapse since the end of treatment was also associated with lower vaccinations.

Conclusion

Influenza vaccination rates of childhood cancer survivor caregivers were suboptimal. Time lapse after completing cancer treatment, caregiver age, and educational level were independently associated with receipt of influenza vaccination by caregivers.

Implications for Cancer Survivors

To promote influenza vaccination in caregivers of childhood cancer survivors to prevent influenza-related morbidity and mortality in childhood cancer survivors is necessary.

Talking about sexual health during survivorship: understanding what shapes breast cancer survivors’ willingness to communicate with providers

Abstract

Purpose

Breast cancer survivor (BCS)–provider communication about sexual health (SH) is often absent or inadequate. Patients report wanting providers to broach the topic, but providers cite barriers to initiating discussions. While the health care community works to address barriers, it is unrealistic to rely solely on provider initiation of SH conversations. This research investigates willingness to communicate about sexual health (WTCSH) to better understand what may interfere with survivors’ ability to self-advocate and receive care for these concerns.

Methods

(N = 305) BCSs completed online surveys. Hierarchical multiple regression determined the relationship between Sexual Quality of Life—Female (SQOL—F), which measures psychological and social dimensions of SH and WTCSH. Interviews were then conducted with forty BCSs. The constant comparative method was used to thematically analyze the transcripts.

Results

The mean SQOL score was 53.4 out of 100. No statistically significant differences in SQOL or WTCSH were found by age or survivorship length. The positive relationship between WTCSH and SQOL was significant, F (6,266) = 4.92, p < .000, adj. R² = .080). Five themes illustrated factors that shape WTCSH: (1) comfort discussing SH; (2) perception of demographic similarity/discordance; (3) patient-centered communication; (4) belief that SH is (un)treatable, and (5) ability to access timely/coordinated care.

Conclusions

Findings establish the significance of SH concerns and provide an in-depth understanding of intrapersonal, interpersonal, and organizational issues informing WTCSH.

Implications for Cancer Survivors

Age and gender dynamics, perceptions of provider SQOL messaging, and futility influence survivor openness. Addressing these areas may encourage disclosure among women who would otherwise continue to suffer in silence.