Insights into the use of social comparisons within an advanced cancer setting

Background The PROACT (Patient Reported Outcomes in cancer, impact of Age and Carer role demands associated with Treatment) study had the primary aim of developing two scales measuring the impact of cancer on wellbeing and caregiving responsibilities, for people with cancer and the individuals supporting them. The project consisted of four consecutive studies; the first stage was the collection of qualitative narratives to understand the patient/caregiver experience. This paper reports on an incidental finding from these narratives. Methods The researchers conducted semi-structured interviews exploring participants’ views on the impact cancer had on their quality of life. They interviewed 24 people with stage III/IV cancer from three tumor groups, Lung (n=6), Melanoma (n=9) and Ovarian (n=9), and 23 informal caregivers. Interviews were recorded and transcribed verbatim and a framework was developed through open coding. A framework approach to thematic analysis was employed. Results Twenty themes and 33 sub-themes were identified including topics such as impact for caregiving and employment. There was an unplanned finding of participants recurrently using concepts of ‘luck’ or good fortune when describing their situations. While not a theme itself this narrative was present across the framework, occurring when individuals made comparisons to ‘other’ groups of people perceived as facing more difficulties. Conclusions This analysis provides insight into the use of language by both patients and informal caregivers in the advanced disease setting, laying the foundation for future research exploring any effects this has on dyadic wellbeing. These interpretations form a basis to explore whether this language can be harnessed by healthcare professionals to deliver information in line with an individual’s conceptualization of their situation

The pervasive nature of uncertainty – a qualitative study with patients with advanced cancer and their informal caregivers

Purpose: To explore the impact of extended cancer survival on broader aspects of life and wellbeing such as occupational, financial and family life for patients with advanced cancer and their nominated informal caregivers. Methods: In-depth qualitative interviews, transcribed verbatim. A thematic framework was developed from an initial process of open coding and tested iteratively as new data were collected. Results: 24 patient-caregiver dyads with advanced ovarian (9) melanoma (9) or lung cancer (6). Patients were aged 39-84 (median 62 years), caregivers 19-85 (median 54 years). Caregivers were the partners/spouses (15), children (5), siblings (2) and friends (2) of patients. One particular theme, ‘uncertainty’, encompassed many issues such as planning for the future, providing for one’s family, employment and finances. Uncertainties were related to the timescale and trajectory of the disease and lack of control or ability to make plans. There were marked age effects. Accounts from within the same dyad often differed and patients and caregivers rarely discussed concerns with each other. Conclusions: Both patients and their informal caregivers were challenged by the uncertainties around living with advanced cancer and the lack of a defined trajectory. This impacted many diverse areas of life. Although distressing, dyads seldom discussed these concerns with each other. Implications for survivors: Uncertainty is a recurrent issue for cancer survivors and their families impacting broad aspects of their lives and their ability to move forward however patients and caregivers in this study rarely discussed these concerns together. Uncertainty should be discussed periodically, together, and 3 health care professionals could facilitate these discussions. The use of one or more ‘trigger questions’ in clinic appointments may provide an opportunity to start these dialogues

Development and validation of the caregiver roles and responsibilities scale in cancer caregivers

Purpose The Caregiver Roles and Responsibilities Scale (CRRS) was developed to facilitate formal assessment of broad life impacts for informal (i.e. unpaid) caregivers to people with cancer. Here we report the development and initial validation. Methods The CRRS was developed from the thematic analysis of two interview studies with cancer patients (stage III-IV breast, gynaecological, lung or melanoma) and caregivers. In the evaluation studies, participants completed the CRRS alongside the Caregiver Quality of Life - Cancer, the main criterion measure for concurrent validity, and the WHOQOL-BREF for additional convergent validity data. Questionnaires were completed at baseline, 7-days and 2-months. Demographic data and patient characteristics were collected at baseline. Results Two-hundred and forty-five caregivers to people with stage I-IV breast, colorectal, gynaecological, head and neck, lung or renal cancer or melanoma completed the CRRS at least once. The final 41 core items selected comprised five subscales: Support and Impact, Lifestyle, Emotional Health and Wellbeing, Self-care and Financial Wellbeing as well as three standalone items. Missing data rate was low (0.6%); there were no ceiling or floor effects for total scores. Cronbach’s alpha was 0.92 for the CRRS-41; 0.75-0.87 for the subscales. CRRS showed good test-retest reliability (ICC=0.91), sensitivity to change and the predicted pattern of correlation with validation measures r=0.75-0.89. The standalone 7-item jobs and careers subscale requires further validation. Conclusions Initial evaluation shows the CRRS has good validity and reliability and is a promising tool for the assessment of the effects of cancer and cancer treatment on the lives and wellbeing of informal caregivers

An online review of informational sources for advanced or high-risk cutaneous squamous cell carcinoma

Objective Cutaneous squamous cell carcinoma (cSCC) is one of the most prevalent non-melanoma skin cancers worldwide. While usually treatable, patients with high-risk or advanced disease have few treatment options and limited resources available. This review assesses what online information resources are available to patients and their families about either high-risk or advanced cSCC. Methods Searches were run, via Google, using 8 terms such as ‘advanced cutaneous squamous cell carcinoma patient information’. Advertisements were removed and the first 3 pages/30 results from each search were screened for duplicates and then against eligibility criteria. Websites needed to have been updated within the past 5 years, be freely accessible, designed specifically for patients and refer to the advanced disease or high-risk setting. Remaining results were assessed using the DISCERN tool. Results Of the final 240 results, 121 were duplicates and 104 were ineligible. The remaining 15 sources were predominantly aimed at American audiences, used variable terminology and revealed differing treatment pathways. Only 3 sites were deemed as ‘high’-quality information sources. Conclusion There is a lack of accessible online information on high-risk or advanced cSCC for patients. What is available is often too scientific or clinical and lacks clarity about the disease and treatment options. Practice Implications Further work is needed to improve the integrity and accessibility of online sources and to signpost patients to the most reliable information. This should include elements of patient led research, clinical education and information development

Development and validation of the patient roles and responsibilities scale in cancer patients

Purpose The Patient Roles and Responsibilities Scale (PRRS) was developed to enable a broader evaluation of the impact of cancer and cancer treatment, measuring ‘real world’ roles and responsibilities such as caring for others and financial and employment responsibilities. Here we report the development and initial validation. Methods The 29-item PRRS was developed from the thematic analysis of two interview studies with cancer patients and caregivers. In the evaluation study, participants completed the PRRS alongside the Social Difficulties Inventory (SDI), the main criterion measure for concurrent validity, and the Functional Assessment of Cancer Therapy – General (FACT-G) and WHO Quality Of Life-BREF (WHOQOL-BREF) for additional convergent validity data. Questionnaires were completed at baseline, 7-days (PRRS only) and 2-months. Demographic data and patient characteristics were collected at baseline. Results One hundred and thirty-five patients with stage III/IV breast, lung or gynaecological cancer or melanoma completed the PRRS at least once. Five items performed poorly and were removed from the scale. The final 16 core items selected comprised 3 dimensions: Family Wellbeing, Responsibilities and Social Life, and Financial Wellbeing, identified in principal component analysis, accounting for 61.5% of total variance. Missing data (0.6%) and floor/ceiling effects were low (0%/1.5%). Cronbach’s alpha was 0.9 for the PRRS-16; 0.79-0.87 for the subscales. PRRS showed good test-retest reliability (ICC-0.86), sensitivity to change and the predicted pattern of correlation with validation measures r=ǀ0.65-0.77ǀ. The standalone 7-item jobs and careers subscale requires further validation. Conclusions Initial evaluation shows the PRRS is psychometrically robust with potential to inform the evaluation of new treatments in clinical trials and real world studies

Sexual functioning in 4,418 postmenopausal women participating in UKCTOCS: a qualitative free-text analysis

Objective: Sexual well-being can contribute significantly to the overall quality of women's lives. This qualitative study aimed to examine sexual activity, functioning, and satisfaction in a large sample of postmenopausal women from the UK Collaborative Trial of Ovarian Cancer Screening (UKCTOCS) Methods: Thematic analysis was used to evaluate the free-text data of the Fallowfield Sexual Activity Questionnaire (FSAQ) completed by UKCTOCS participants at baseline before annual screening. Results: A total of 24,305 women completed the baseline FSAQ and 4,525 (19%) provided free-text data, with 4,418 comments eligible for analysis. Median age was 64 years; 65% had a partner and 22.5% were sexually active. Four interrelated themes were derived: partner availability, physical and sexual health, mental well-being, and interpersonal relationships. Primary reason for absence of sexual activity was lack of a partner, mainly due to widowhood (n = 1,000). Women discussed how partner's medical condition (27%) or sexual dysfunction (13.5%), their own physical health (18%) or menopause-related symptoms (12.5%), and prescribed medication (7%) affected sexual activity. Impact of low libido in self (16%) or partner (7%), relationship problems (10.5%) or logistics (6%), and perceptions of ageing (9%) were also mentioned. Few (3%) referred to positive sexual experiences or had sought medical help for sexual problems (6%). Conclusions: This qualitative analysis explored postmenopausal women's perspective on their sexual functioning. Having an intimate partner and good physical health are key factors for continuation of sexual activity and satisfaction. Further sexual education for healthcare professionals is needed to raise awareness about sexuality and sexual difficulties in later life

Patient-reported outcome measures of the impact of cancer on patient’s everyday lives: a systematic review

Purpose: Patients with advanced disease are living longer and commonly used patient-reported outcome measures (PROMs) may miss relevant elements of the quality of extended survival. This systematic review examines the measures used to capture aspects of the quality of survival including impact on patients’ everyday lives such as finances, work and family roles. Methods: Searches were conducted in MEDLINE, EMBASE, CINAHL and PsycINFO restricted to English language articles. Information on study characteristics, instruments and outcomes was systematically extracted and synthesised. A predefined set of criteria was used to rate the quality of studies. Results: From 2761 potentially relevant articles, 22 met all inclusion criteria, including 10 concerning financial distress, 3 on roles and responsibilities and 9 on multiple aspects of social well-being. Generally, studies were not of high quality; many lacked bias free participant selection, had confounding factors and had not accounted for all participants. High levels of financial distress were reported and were associated with multiple demographic factors such as age and income. There were few reports concerned with impacts on patients’ roles/responsibilities in everyday life although practical and emotional struggles with parenting were identified. Social difficulties were common and associated with multiple factors including being a caregiver. Many studies were single time-point surveys and used non-validated measures. Exceptions were employment of the COST and Social Difficulties Inventory (SDI), validated measures of financial and social distress respectively. Conclusions: Impact on some important parts of patients’ everyday lives is insufficiently and inconsistently captured. Further PROM development focussing on roles and responsibilities, including work and caring for dependents, is warranted. Implications for Cancer Survivors: Factors such as finances, employment and responsibility for caring for dependents (e.g. children and elderly relatives) can affect the well-being of cancer survivors. There is a need to ensure that any instruments used to assess patients’ social well-being are broad enough to include these areas so that any difficulties arising can be better understood and appropriately supported

‘A fascinating time to be involved with research’: Exploring the impact of COVID-19 on postgraduate psycho-oncology researchers

Key pointsTo explore UK postgraduate researcher (PGRs) COVID-19 experiences, the British Psychosocial Oncology Society (BPOS) conducted an online survey23 respondents’ qualitative data were analysed thematically and summarised using the strengths, weaknesses, opportunities, and threats (SWOT) frameworkCOVID-19 offered opportunities to develop online skills, resilience, and adaptability, whilst opening wellbeing conversationsPGRs reported practical difficulties, social isolation, unhealthy work/life balance and concerns about future careersPGRs have had an unprecedented and continually evolving experience; BPOS and relevant institutions must continue to provide adequate support and development opportunities to safeguard their future

Abstract P5-15-04: An intervention to help improve understanding of gene expression profiling tests in breast cancer: which is best, an information film or leaflet?

Background: Discussions between oncologists and patients about Gene Expression Profiling (GEP) risk of recurrence results can be challenging especially if scores are intermediate or close to the high or low risk of recurrence thresholds. Although many clinical teams provide patients with information leaflets, these often employ complex language written to meet regulatory guidelines rather than to educate effectively the end-user. We designed two 8-minute information films that were conversational in style with simple explanatory graphics. We then compared participants’ knowledge retention after reading leaflets explaining GEP tests and recurrence risks with that following their viewing of a film. Methods: Using a randomised factorial crossover design, at time-point one (T1) women aged 45-75 yrs without breast cancer, read either a leaflet about Oncotype DX or Prosigna testing or watched the corresponding information film. They could read or watch as many times as they liked and take notes. In structured interviews that were recorded, we asked 9 different questions to determine participants’ knowledge. Next day (T2) information in the opposite format was provided and knowledge was re-assessed. The maximum possible score was 18. Additional questions probed which modality participants had found the easiest to understand, their preferences for either the film or leaflet and reasons for these. Results: 120 women from different socio-educational groups took part, 60 of whom had Oncotype DX films and leaflets and 60 the Prosigna versions. Irrespective of the GEP test being described, their knowledge scores at T1 were significantly higher following viewing of the films compared with those after reading leaflets (mean difference 4.1 points; p<0.0001; 95% CI 3.2, 5.0). When participants read leaflets first and subsequently viewed films mean knowledge significantly increased (5.3 points, p<0.0001; 95% CI 4.4, 6.3). In contrast mean knowledge decreased by 2 points (p<0.01; 95% CI -3.1, -0.8) at T2 if the film was viewed first. Extraneous and sometimes irrelevant information already read in the leaflets had confused many participants. Overall clear preferences for the film were expressed (88/120; 73.3%); (leaflet = 28/120; 23.3%); 4/120; (3.3%) no preference. Primary reasons for this included the clarity, ease of understanding and the reassurance gained from the voice-overs in the films. Conclusion: Provision of complex information in a film format using simple graphics helped participants’ understanding of GEP test results more than reading information alone and was preferred significantly by the majority