Does implementation matter if comprehension is lacking? A qualitative investigation into perceptions of advance care planning in people with cancer

Purpose: While advance care planning holds promise, uptake is variable and it is unclear how well people engage with or comprehend advance care planning. The objective of this study was to explore how people with cancer comprehended Advance Care Plans and examine how accurately advance care planning documentation represented patient wishes. Methods: This study used a qualitative descriptive design. Data collection comprised interviews and an examination of participants’ existing advance care planning documentation. Participants included those who had any diagnosis of cancer with an advance care plan recorded: Refusal of Treatment Certificate; Statement of Choices; and/or Enduring Power of Attorney (Medical Treatment) at one cancer treatment centre. Results: Fourteen participants were involved in the study. Twelve participants were female (86%). The mean age was 77 (range: 61-91) and participants had completed their advance care planning documentation between 8 and 72 weeks prior to the interview (mean 33 weeks). Three themes were evident from the data: Incomplete advance care planning understanding and confidence; Limited congruence for attitude and documentation; Advance care planning can enable peace of mind. Complete advance care planning understanding was unusual; most participants demonstrated partial comprehension of their own advance care plan, and some indicated very limited understanding. Participants’ attitudes and their written document congruence was limited, but advance care planning was seen as helpful. Conclusions: This study highlighted advance care planning was not a completely accurate representation of patient wishes. There is opportunity to improve how patients comprehend their own advance care planning documentation

'Share your views'-international consultation informs a patient engagement strategy for the Multinational Association of Supportive Care in Cancer

Introduction Engaging with patients and the public (consumers and community) enhances the relevance of cancer control developments; however, challenges remain to integrate into processes. Medical and other professional societies are well-positioned to foster and endorse best practice. Methods Between October and December 2021, the Multinational Association of Supportive Care in Cancer (MASCC) conducted a global consultation with those who identified as "people affected by cancer". Recruitment to an online cross-sectional survey was by a combination of purposive and convenience sampling to determine preferred terminologies and experiences with MASCC and other cancer-related societies. Results The survey was completed by 343 respondents from 29 countries, a majority being female (78.1%) and younger than 60 years of age (62.1%). Respondents preferred to be identified as 'patient' from a set of defined terms; however, this only accounted for 49-67% of selected response across geographical regions. Only 22.2% of respondents had engaged previously with MASCC, of whom 90.8% reported a positive experience through involvement with education and information, networking and collaboration, and practice guidelines. Respondents perceived areas of opportunity as early involvement in decision-making, educational initiatives, open communication, and information sharing. Across all geographical regions, responders chose a preference to contribute to future consumer research (53.0%), policy (31.7%) or consumer engagement activities (56.9%) including participation in a conference session (65.0%) or patient day (47.9%). Conclusions This survey provides a first insight into how consumers wish to engage with MASCC. These values will be embedded into a strategy that aims for effective and sustainable partnerships with multinational consumers.</p

Clinical Oncology Society of Australia: Position statement on cancer-related malnutrition and sarcopenia

© 2020 The Authors. Nutrition & Dietetics published by John Wiley & Sons Australia, Ltd on behalf of Dietitians Australia. This position statement describes the recommendations of the Clinical Oncology Society of Australia (COSA) regarding management of cancer-related malnutrition and sarcopenia. A multidisciplinary working group completed a review of the literature, focused on evidence-based guidelines, systematic reviews and meta-analyses, to develop recommendations for the position statement. National consultation of the position statement content was undertaken through COSA members. All people with cancer should be screened for malnutrition and sarcopenia in all health settings at diagnosis and as the clinical situation changes throughout treatment and recovery. People identified as “at risk” of malnutrition or with a high-risk cancer diagnosis or treatment plan should have a comprehensive nutrition assessment; people identified as “at risk” of sarcopenia should have a comprehensive evaluation of muscle status using a combination of assessments for muscle mass, muscle strength and function. All people with cancer-related malnutrition and sarcopenia should have access to the core components of treatment, including medical nutrition therapy, targeted exercise prescription and physical and psychological symptom management. Treatment for cancer-related malnutrition and sarcopenia should be individualised, in collaboration with the multidisciplinary team (MDT), and tailored to meet needs at each stage of cancer treatment. Health services should ensure a broad range of health care professionals across the MDT have the skills and confidence to recognise malnutrition and sarcopenia to facilitate timely referrals and treatment. The position statement is expected to provide guidance at a national level to improve the multidisciplinary management of cancer-related malnutrition and sarcopenia

Exploring the nature and impact of taste dysfunction in people receiving chemotherapy

© 2013 Dr. Anna Gaye BoltongSelf-reported ‘taste’ problems are common in people receiving chemotherapy and have implications for nutritional and psychosocial domains. Taste refers to the perception derived when chemical molecules stimulate taste receptor fields in the oral cavity whereas flavour perception involves at least three independent sensory systems including taste, smell and texture. Conflation of the terms taste and flavour contributes to clinician confusion and reduces the opportunity to develop effective strategies to address taste problems in cancer patients. The research reported in this thesis aimed to characterise the extent to which taste function and food hedonics contribute to the eating and drinking experience in people receiving chemotherapy and to investigate how this is managed in the clinical setting. There was a mixed methods approach to this program of research that was comprised of three separate studies, in two phases, designed to: Phase 1, qualitative 1. Describe current practice surrounding taste function and food hedonics in the clinical oncology setting (Study 1); 2. Understand the experience and consequences of altered taste function and food hedonics for people receiving chemotherapy (Study 2); and Phase 2, quantitative 3. Describe the patterns of altered taste function and food hedonics across the chemotherapy treatment trajectory (Study 3). In the Phase 1 studies, patient and clinician interviews were used to explore a) clinician practice regarding the management of taste problems and b) patient and carer descriptions, experiences and consequences of taste changes. This qualitative phase informed the quantitative phase of the research: a longitudinal study of 52 women receiving chemotherapy for breast cancer that assessed taste function, appetite and food liking six times from before chemotherapy to 2 months after chemotherapy and investigated whether changes in these outcomes were associated with dietary intake, nutritional status or social dining activity. Phase 1 findings demonstrated that ‘taste’ problems refer to a raft of issues related to the wider aspects of flavour including changes to the sense of smell or touch, or to problems with appetite or food liking. Clinicians have limited capacity to distinguish between these scenarios. These changes shaped what patients chose to eat, drink, cook and purchase, and influenced how they dined and how they felt. A need for new approaches to classifying and describing flavour problems was identified and a requirement for better quality information and evidence with which to guide patients was indicated. In Phase 2, patterns of taste and hedonic changes were characterised in an unprecedented fashion across the treatment trajectory. Findings from Phase 2 analyses showed taste function and food hedonics were adversely influenced with greatest change closest to chemotherapy administration, followed by a gradual return to baseline measures. Problems resolved by 2 months after completion of chemotherapy. Change from baseline in ability to correctly identify all tastants was significant early in the third chemotherapy cycle (difference = 18.2%; 95% CI = 2.7, 32.9; p = 0.02) and final chemotherapy cycle (difference = 19.6%; 95% CI = 3.0, 35.1; p = 0.02). Decreased liking of sweet food (chocolate) was observed in the early (d = 0.77; p = 0.002) and middle stages of the third chemotherapy cycle (d = 0.70; p = 0.003) and early in the final chemotherapy cycle (d = 0.89; p = 0.001). Appetite was significantly decreased from baseline early in both the third and final chemotherapy cycles (d = 1.02; p < 0.001 respectively). Associations were found between taste and hedonic changes and dietary intake, nutritional status and social dining. Change in ability to correctly identify tastants was associated with reduced energy intake (r = 0.32; p = 0.005) early in the third chemotherapy cycle. At this assessment point, decreased liking of a sweet food item was also associated with reduced energy intake (r = 0.35; p = 0.001). Appetite loss was associated with reduced energy (r = 0.35; p = 0.001) and protein intake (r = 0.36; p = 0.001) early in a chemotherapy cycle, decrease in BMI over the study period (r = 0.36; p = 0.001), and change in overall nutritional status as assessed by PG-SGA score (r = 0.18; p = 0.09). Early in the final chemotherapy cycle, small-sized but non-significant associations were seen between taste change and social dining episodes (r = 0.22, p = 0.09) and between appetite loss and social dining episodes (r = 0.18, p = 0.16). Clinicians are ill equipped to support patients who report taste problems due to an absence of assessment tools or classification symptoms to identify problems described colloquially as ‘taste’. An emerging taxonomy of taste arising from this research goes some way to address the need for a classification system linking patient language to specific sensory or hedonic disturbances. Research findings will be used to guide the development of more specific pre-chemotherapy education material for patients

Chemosensory science in the context of cancer treatment: implications for patient care

Introduction: This collaborative commentary brings together both clinical and sensory science perspectives in an effort to explain the mechanisms of cancer treatment and the ensuing implications for the sensorium. Strategy: This paper makes the distinction between food hedonics and true chemosensory effects in the cancer context and describes the adverse effects cancer and its treatment have on the eating and drinking experience, including gastronomic, nutritional and emotional implications. Results from a prospective breast cancer cohort study, conducted by an interdisciplinary team of nurses, medical oncologists, dietitians and sensory science researchers shed new light on specific sensory symptomatology associated with chemotherapy treatment and the implications this has for informing reliable pre-treatment patient education. Findings: Two conceptual models are posed as frameworks for better understanding the determinants and consequences of altered eating and drinking experiences during chemotherapy, as well as the link between patient-reported symptoms and chemosensory or hedonic disturbances. Discussion: Application of evidence of cancer treatment and its sensory effects in the patient treatment context continues to be a challenge for cancer clinicians, especially where standardised testing of taste and smell function are not able to be practically administered. Conclusions: Recommendations are made for further research and practice pursuits to underpin improved food enjoyment and dietary quality throughout the cancer trajectory. Clinician education of sensory science is also encouraged

Experiences and consequences of altered taste, flavour and food hedonics during chemotherapy treatment

PURPOSE: Self-reported taste alterations are common in people receiving chemotherapy; however, it is usually unclear whether these reports refer to changes to the sense of taste itself or to problems related to the broader phenomenon of flavour, or the hedonic experience of eating and drinking. The purpose of this study was to explore patient and carer descriptions, experiences and consequences of taste and flavour changes associated with oxaliplatin treatment. METHODS: This study utilised a grounded theory research design. Purposeful sampling was used to recruit eligible patients who had self-reported taste changes in relation to oxaliplatin-containing chemotherapy for colorectal cancer. Content analysis of interview data was performed using an analysis framework derived from previous sensory and nutritional sciences and supportive care research. RESULTS: Ten patients and four carers participated in semi-structured interviews. The overarching theme identified from the data was reduced food enjoyment. In addition to changes to taste, participants described sensory and hedonic changes which influence overall flavour perception and food enjoyment. Reduced food enjoyment had dietary, social and emotional consequences for patients and carers. CONCLUSIONS: 'Taste' problems during oxaliplatin treatment mostly relate to the broader phenomena of flavour. This study has helped to unravel the major sensory determinants of the eating and drinking experience in the chemotherapy setting and has provided guidance regarding relevant and measurable endpoints of chemotherapy-related flavour changes. There remains a gap in knowledge between the pattern of flavour changes associated with chemotherapy treatment and how this influences dietary intake and nutritional status