Co-design of an intervention exploring meaning and purpose after spinal cord injury.

PURPOSE: Rebuilding a strong sense of meaning and purpose following trauma is a vital contributor to post-traumatic growth and adapting well to a spinal cord injury. This project aimed to develop an intervention that used the concept of post-traumatic growth to foster a stronger sense of meaning and purpose in people with a spinal cord injury. METHODS: Using participatory action research methodology, the intervention was designed in an iterative process with health professionals and people with lived experience of spinal cord injury. We developed a ten-week online group program and delivered two pilot programs to 13 participants. We used their feedback to further refine the program before finalisation. RESULTS: A participatory action research approach resulted in a positive intervention well received by participants and consumer organisations. Feedback suggests the intervention shows promise for improvements in functional and psychosocial outcomes and has long-term viability. CONCLUSIONS: The project successfully developed and delivered a novel program that uses the concept of post-traumatic growth to foster a stronger sense of meaning and purpose. Further implementation of the program with larger numbers will allow for evaluation of the program's effectiveness.

Group-based intervention programs based on principles of post-traumatic growth can help people with spinal cord injury explore meaning and purpose.Co-design, development and implementation of interventions help to ensure such programs appeal to consumers, meet their needs, and are sustainable.Interventions can be delivered effectively online.

Embedding electronic patient-reported outcome measures into routine care for patients with stage III MELanoma (ePROMs-MEL): protocol for a prospective, longitudinal, mixed-methods pilot study.

INTRODUCTION: The benefits of patient-reported feedback, using questionnaires that allow patients to report how they feel and function without any interpretation from healthcare professionals, are well established. However, patient-reported outcomes measures (PROMs) are not routinely collected in patients with melanoma in Australia. The aim of this study is to evaluate the feasibility and acceptability of implementing electronic PROMs (ePROMs) into routine care from the perspectives of patients with stage III melanoma and their treating clinical team. METHODS AND ANALYSIS: A minimum of 50 patients and 5 clinicians will be recruited to this prospective, longitudinal pilot study (ePROMs-MELanoma). The study uses a mixed-methods approach (quantitative PROMs questionnaires and end-of-study surveys with qualitative interviews) and commenced in May 2021 in surgical and medical melanoma clinics at two sites in metropolitan Sydney, Australia. The primary outcomes are measures of feasibility and acceptability, comprising descriptive questionnaire completion statistics, and proportion of patients who reported that these PROMs were easy to complete and measured items they considered important. Clinician and clinic staff views will be canvassed on the appropriateness of these PROMs for their patients, change in referral practice and uptake and incorporation into routine practice. Secondary aims include measurement of improvements in patients' emotional and physical health and well-being, and utility of real-time data capture and clinician feedback. All participants will complete the Distress Thermometer and EQ-5D-5L questionnaires in the clinic using a tablet computer at baseline and two to three subsequent follow-up appointments. Participants who report a score of 4 or higher on the Distress Thermometer will be triaged to complete an additional three questionnaires: the QLQ-C30, Depression, Anxiety and Stress Scale and Melanoma Concerns Questionnaire-28. Results will be generated in real time; patients with psychosocial distress or poor quality of life will discuss possible referral to appropriate allied health services with their clinician. Thematic analysis of interviews will be conducted. ETHICS AND DISSEMINATION: Ethics approval obtained from St Vincent's Hospital Human Research Ethics Committee on 19 September 2019 (2019/ETH10558), with amendments approved on 8 June 2022. Patient consent is obtained electronically prior to questionnaire commencement. Dissemination strategies will include publication in peer-reviewed journals and presentation at international conferences, tailored presentations for clinical societies and government bodies, organisational reporting through multidisciplinary meetings and research symposia for local clinicians and clinic staff, and more informal, lay reports and presentations for consumer melanoma representative bodies and patient participants and their families. TRIAL REGISTRATION NUMBER: ACTRN12620001149954.

Spiritual Well-Being in People Living with Persistent Non-Cancer and Cancer-Related Pain.

CONTEXT: Existential and spiritual factors are known to play an important role in how people cope with disability and life-threatening illnesses such as cancer. However, comparatively little is known about the impact of pain on factors such as meaning and purpose in one's life and their potential roles in coping with pain. OBJECTIVES: The aim of this study was to determine spiritual well-being scores in people with persistent pain and to compare these with people with cancer and healthy controls. METHODS: We assessed 132 people with chronic pain, 74 people with cancer (49 with pain and 25 without pain) and 68 control participants using standardised measures of pain-related variables including pain intensity, physical function, mood and cognitions. Spiritual well-being was also assessed using a validated and widely used questionnaire, the Functional Assessment of Chronic Illness Therapy - Spirituality Scale (FACIT-Sp). RESULTS: Spiritual well-being scores were significantly lower in people with persistent pain when compared with controls and were no different when compared with people with cancer, including those who had cancer and pain. In addition, low levels of meaning and purpose were significant predictors of depression, anxiety, and stress across all groups. CONCLUSION: The findings demonstrate that persistent pain is associated with spiritual distress that is equal to those observed in people who have cancer. Furthermore, those who have higher levels of meaning and purpose are less likely to develop mood dysfunction when experiencing pain, indicating they may have a protective role.

What information is communicated by radiation therapists to patients during education sessions on the first day of treatment?

This study examined the content covered by radiation therapists (RTs) during education sessions; the frequency and types of questions asked by patients; and the relationship between patient characteristics and the number of questions asked. Fifty-eight education sessions were audio-recorded and transcribed verbatim. A coding scheme was developed to examine the frequency of topics covered. It comprised 16 topics under four themes: (a) treatment schedule, (b) procedural information, (c) treatment-related side effects and (d) who will be involved in treatment provision. All education sessions covered information about the treatment plan (n = 58, 100%), and the majority described procedural information about what happens in the treatment room (n = 56, 97%). Least information was given about who will be providing treatment. On average, patients asked a mean of 6 questions (SD = 4.95; range = 0-28). Most frequently asked questions concerned the general treatment (logistics, schedule), accounting for 67% of all questions asked. The least common types of questions were related to the impact of treatment (6%). There were no statistically significant differences in the total number of questions and patient demographics. Patients are provided with most, but not all, of the recommended information. Tailoring of information by RTs was enabled in response to questions asked.

Exploring symptom meaning: perspectives of palliative care physicians.

CONTEXT: Understanding patients' symptom experiences is essential to providing effective clinical care. The discussion between patients and physicians of symptom meaning and its significance, however, is ill understood. OBJECTIVES: To investigate palliative care physicians' understanding of symptom meaning, and their experiences of and attitudes towards the discussion of symptom meaning with patients. METHODS: Semi-structured interviews were conducted (N = 17) across Sydney, Australia. Transcripts were analysed using framework analysis. RESULTS: Six key themes were identified: (1) definitions of symptom meaning (causal meanings, functional impact, existential impact, and cascade of meanings); (2) meanings are personal (demographic, culture, spiritual, and family differences); (3) eliciting meanings requires subtlety and trust (following the patient's cues); discussing meaning can be (4) hard (for the patient and health professional); (5) therapeutic (assuaging fears, feeling listened to and valued, increased sense of control, and reduced symptom distress); and (6) enhances clinicians' practice and work satisfaction (provision of more tailored care, reassurance through the provision of information, and strengthening of doctor-patient relationship). CONCLUSIONS: Exploring symptom meaning can serve to provide information, alleviate anxiety, and facilitate individualised care, but only when patients present cues or are open to discuss symptom-related concerns. However, various barriers hinder such dialogue in consultations. Greater awareness of symptom meaning and its influence may facilitate physicians exploring symptom meaning more with patients in the future.

What is symptom meaning? A framework analysis of communication in palliative care consultations.

OBJECTIVE: There is a limited understanding of symptom meaning and its significance to clinical practice within symptom experience literature. This study aims to qualitatively explore the ways in which symptom meanings are discussed by patients and responded to by palliative care physicians during consultations. METHODS: Framework analysis was conducted with 40 palliative care consultation transcripts. RESULTS: 55% of consultations discussed symptom meaning. Six themes regarding patients' symptom meanings emerged while four themes conveyed physicians' responses to these utterances. Key symptom meanings included symptoms representing diminished function and uncertainty about symptom cause or future. Physicians usually gave scientific medical responses concerning symptom cause and treatment, versus reassurance or empathy. CONCLUSION: This study has provided greater insight into the different symptom meanings that exist for palliative care patients. Physicians' responses highlight their reliance on medical information when patients are distressed. Future studies should explore the impact of different responses on patient outcomes, and health practitioners' views about optimal responses. PRACTICE IMPLICATIONS: Physicians could explore symptom meanings with their patients, looking out for those identified here. Apart from information-giving and treatment, active listening to these concerns as they present in consultations may help improve the therapeutic relationship and better guide optimal care.

Communication during radiation therapy education sessions: The role of medical jargon and emotional support in clarifying patient confusion.

OBJECTIVE: Radiation oncology consultations involve explanation of complex technical concepts using medical jargon. This study aimed to: analyse types and frequency of medical jargon that radiation therapists (RTs) use during education sessions; identify how patients seek clarification from RTs; and, explore RTs communication strategies. METHODS: Education sessions were audio-recorded and transcribed. Medical jargon was analysed using MaxDictio (a vocabulary analysis programme). A distinction was made between specialised (specialised terms used in RT or cancer) and contextual jargon (common everyday words with a different meaning in RT). Qualitative data were analysed using Framework analysis. RESULTS: Fifty-eight patients and 10 RTs participated. Contextual treatment jargon were the most frequently used jargon (32.2%) along with general medical terms (34.6%). Patients appeared uncertain about the number of treatments, side effects, and the risks of radiation. Patients sought clarification by asking RTs to explain or repeat information. RTs replaced jargon with a simpler word, used everyday analogies, and diagrams. CONCLUSION: Use of medical jargon is common in RT education sessions. RTs used different jargon types to varying degrees, but contextual jargon dominated. PRACTICE IMPLICATIONS: Training RTs how to tailor information to enhance patients' understanding would be beneficial. Future research exploring medical jargon used in other (non-) oncology settings is required.

Clinicians' Perspectives on Managing Symptom Clusters in Advanced Cancer: A Semistructured Interview Study.

CONTEXT: Managing symptom clusters or multiple concurrent symptoms in patients with advanced cancer remains a clinical challenge. The optimal processes constituting effective management of symptom clusters remain uncertain. OBJECTIVES: To describe the attitudes and strategies of clinicians in managing multiple co-occurring symptoms in patients with advanced cancer. METHODS: Semistructured interviews were conducted with 48 clinicians (palliative care physicians [n = 10], oncologists [n = 6], general practitioners [n = 6], nurses [n = 12], and allied health providers [n = 14]), purposively recruited from two acute hospitals, two palliative care centers, and four community general practices in Sydney, Australia. Transcripts were analyzed using thematic analysis and adapted grounded theory. RESULTS: Six themes were identified: uncertainty in decision making (inadequacy of scientific evidence, relying on experiential knowledge, and pressure to optimize care); attunement to patient and family (sensitivity to multiple cues, prioritizing individual preferences, addressing psychosocial and physical interactions, and opening Pandora's box); deciphering cause to guide intervention (disaggregating symptoms and interactions, flexibility in assessment, and curtailing investigative intrusiveness); balancing complexities in medical management (trading off side effects, minimizing mismatched goals, and urgency in resolving severe symptoms); fostering hope and empowerment (allaying fear of the unknown, encouraging meaning making, championing patient empowerment, and truth telling); and depending on multidisciplinary expertise (maximizing knowledge exchange, sharing management responsibility, contending with hierarchical tensions, and isolation and discontinuity of care). CONCLUSION: Management of symptom clusters, as both an art and a science, is currently fraught with uncertainty in decision making. Strengthening multidisciplinary collaboration, continuity of care, more pragmatic planning of clinical trials to address more than one symptom, and training in symptom cluster management are required.

Patients' experiences and perspectives of multiple concurrent symptoms in advanced cancer: a semi-structured interview study.

PURPOSE: Patients with advanced cancer typically experience multiple concurrent symptoms, which have a detrimental impact on patient outcomes. No studies to date have qualitatively explored advanced cancer patients' perceptions of multiple symptoms in oncology and palliative care settings. Understanding the experience of multiple symptoms can inform integrated clinical pathways for treating, assessing and reducing symptom burden. This study aims to describe the beliefs, attitudes and experiences of patients with multiple symptoms in advanced cancer. METHODS: Semi-structured interviews were conducted with 58 advanced cancer patients (23 inpatients and 35 outpatients), recruited purposively from two palliative care centres and two hospital-based oncology departments in Sydney, Australia. Transcripts were analysed thematically. RESULTS: Six major themes were identified: imminence of death and deterioration (impending death, anticipatory fear); overwhelming loss of control (symptom volatility, debilitating exhaustion, demoralisation, isolation); impinging on autonomy and identity (losing independence, refusal to a diminished self, self-advocacy, reluctance to burden others); psychological adaptation (accepting the impossibility of recovery, seeking distractions, maintaining hope, mindfulness, accommodating self-limitations), burden of self-management responsibility (perpetual self-monitoring, ambiguity in self-report, urgency of decision making, optimising management); and valuing security and empowerment (safety in coordinated care, compassionate care, fear of medical abandonment, dependence on social support). Patients transitioning from oncology to palliative care settings were more vulnerable to self-management burden. CONCLUSION: Multiple symptoms have a profound impact on patients' autonomy, function and psychological state. Multiple symptom management and integrated care is needed to empower advanced cancer patients and reduce their struggles with self-management burden, hopelessness, isolation, fear of abandonment and mortality anxieties.

Symptom Clusters in Advanced Cancer Patients: An Empirical Comparison of Statistical Methods and the Impact on Quality of Life.

CONTEXT: Symptom clusters in advanced cancer can influence patient outcomes. There is large heterogeneity in the methods used to identify symptom clusters. OBJECTIVES: To investigate the consistency of symptom cluster composition in advanced cancer patients using different statistical methodologies for all patients across five primary cancer sites, and to examine which clusters predict functional status, a global assessment of health and global quality of life. METHODS: Principal component analysis and exploratory factor analysis (with different rotation and factor selection methods) and hierarchical cluster analysis (with different linkage and similarity measures) were used on a data set of 1562 advanced cancer patients who completed the European Organization for the Research and Treatment of Cancer Quality of Life Questionnaire-Core 30. RESULTS: Four clusters consistently formed for many of the methods and cancer sites: tense-worry-irritable-depressed (emotional cluster), fatigue-pain, nausea-vomiting, and concentration-memory (cognitive cluster). The emotional cluster was a stronger predictor of overall quality of life than the other clusters. Fatigue-pain was a stronger predictor of overall health than the other clusters. The cognitive cluster and fatigue-pain predicted physical functioning, role functioning, and social functioning. CONCLUSIONS: The four identified symptom clusters were consistent across statistical methods and cancer types, although there were some noteworthy differences. Statistical derivation of symptom clusters is in need of greater methodological guidance. A psychosocial pathway in the management of symptom clusters may improve quality of life. Biological mechanisms underpinning symptom clusters need to be delineated by future research. A framework for evidence-based screening, assessment, treatment, and follow-up of symptom clusters in advanced cancer is essential.

Migrant health in cancer: outcome disparities and the determinant role of migrant-specific variables.

BACKGROUND: Multiethnic societies face challenges in delivering evidence-based culturally competent health care. This study compared health-related quality of life and psychological morbidity in a hospital-based sample of first-generation migrants and Australian-born Anglo cancer patients, controlling for potential confounders related to migrant status. Further, it explored the relative contribution of ethnicity versus migrant-related variables. METHODS: Eligible participants, recruited via 16 oncology clinics in Australia, included those over the age of 18, diagnosed with cancer (any type or stage) within the previous 12 months and having commenced treatment at least 1 month previously. RESULTS: In total, 571 migrant patients (comprising 145 Arabic, 248 Chinese, and 178 Greek) and a control group of 274 Anglo-Australian patients participated. In multiple linear regression models adjusted for age, sex, education, marital status, socioeconomic status, time since diagnosis, and type of cancer, migrants had clinically significantly worse health-related quality of life (HRQL; 3.6-7.3 points on FACT-G, p < .0001), higher depression and anxiety (both p < .0001), and higher incidence of clinical depression (p < .0001) and anxiety (p = .003) than Anglo-Australians. Understanding the health system (p < .0001 for each outcome) and difficulty communicating with the doctor (p = .04 to .0001) partially mediated the impact of migrancy. In migrant-only analyses, migrant-related variables (language difficulty and poor understanding of the health system), not ethnicity, predicted outcomes. CONCLUSION: Migrants who develop cancer have worse psychological and HRQL outcomes than Anglo-Australians. Potential targets for intervention include assistance in navigating the health system, translated information, and cultural competency training for health professionals.

Symptom clusters in patients with advanced cancer: a systematic review of observational studies.

CONTEXT: Advanced cancer patients typically experience multiple symptoms, which may influence patient outcomes synergistically. The composition of these symptom clusters (SCs) differs depending on various clinical variables and the timing and method of their assessment. OBJECTIVES: The objective of this systematic review was to examine the composition, longitudinal stability, and consistency across methodologies of common SCs, as well as their common predictors and outcomes. METHODS: A search of MEDLINE, CINAHL, Embase, Web of Science, and PsycINFO was conducted using variants of symptom clusters, cancer, and palliative care. RESULTS: Thirty-three articles were identified and reviewed. Many SCs were identified, with four common groupings being anxiety-depression, nausea-vomiting, nausea-appetite loss, and fatigue-dyspnea-drowsiness-pain. SCs in most cases were not stable longitudinally. The various statistical methods used (most commonly principal component analysis, exploratory factor analysis, and hierarchical cluster analysis) tended to reveal different SCs. Different measurement tools were used in different studies, each containing a different array of symptoms. The predictors and outcomes of SCs were also inconsistent across studies. No studies of patient experiences of SCs were identified. CONCLUSION: Although the articles reviewed revealed four groups of symptoms that tended to cluster, there is limited consistency in the way in which SCs and variables associated with them are identified. This is largely due to a lack of agreement about a robust, clinically relevant definition of SCs. Future research should focus on patients' subjective experience of SCs to inform a clinically relevant definition of SCs and how they are managed over time.

The influence of patient-centered communication during radiotherapy education sessions on post-consultation patient outcomes.

OBJECTIVE: To adapt an observational tool for assessing patient-centeredness of radiotherapy consultations and to assess whether scores for this tool and an existing tool assessing patient-perceived patient-centeredness predict patient outcomes. METHODS: The Measure of Patient-Centered Communication (MPCC), an observational coding system that assesses depth of discussion during a consultation, was adapted to the radiotherapy context. Fifty-six radiotherapy patients (from 10 radiation therapists) had their psycho-education sessions recorded and coded using the MPCC. Patients also completed instruments assessing their perception of patient-centeredness, trust in the radiation therapist, satisfaction with the consultation, authentic self-representation (ASR) and state anxiety. RESULTS: The MPCC correlated weakly with patient-perceived patient-centeredness. The Feelings subcomponent of the MPCC predicted one aspect of ASR and trust, and interacted with level of therapist experience to predict trust. Patient-perceived patient-centeredness, which exhibited a ceiling effect, predicted satisfaction. CONCLUSION: Patient-centered communication is an important predictor of patient outcomes in radiotherapy and obviates some negative aspects of radiation therapists' experience on patient trust. As in other studies, there is a weak association between self-reported and observational coding of PCC. PRACTICE IMPLICATIONS: Radiation therapists have both technical and supportive roles to play in patient care, and may benefit from training in their supportive role.

Should culture affect practice? A comparison of prognostic discussions in consultations with immigrant versus native-born cancer patients.

OBJECTIVE: Poor prognosis is difficult to impart, particularly across a cultural divide. This study compared prognostic communication with immigrants (with and without interpreters) versus native-born patients in audio-taped oncology consultations. METHODS: Ten oncologists, 78 patients (31 Australian-born, 47 immigrants) and 115 family members participated. The first two consultations after diagnosis of incurable disease were audiotaped, transcribed and coded. 142 consultations were included in the analysis. RESULTS: Fifty percent of doctor and 59% of patient prognostic speech units were not interpreted or interpreted non-equivalently when an interpreter was present. Immigrant status predicted few prognostic facts, and oncologist characteristics no prognostic facts, disclosed. Oncologists were significantly less likely to convey hope to immigrants (p=0.0004), and more likely to use medical jargon (p=0.009) than with Australian-born patients. Incurable disease status and a limited life span were commonly acknowledged, generally with no timeframe provided. Physical issues were discussed more commonly than emotional aspects. CONCLUSIONS: While culture did not appear to influence doctor speech, interpreters filtered or blocked much prognostic communication. PRACTICE IMPLICATIONS: Initiatives to empower all patients to attain needed information, optimise communication when an interpreter is present and train cancer health professionals in culturally appropriate care, are urgently required.

Interpretation in consultations with immigrant patients with cancer: how accurate is it?

PURPOSE: Immigrants with cancer often have professional and/or family interpreters to overcome challenges communicating with their health team. This study explored the rate and consequences of nonequivalent interpretation in medical oncology consultations. PATIENTS AND METHODS: Consecutive immigrant patients with newly diagnosed with incurable cancer, who spoke Arabic, Cantonese, Mandarin, or Greek, were recruited from the practices of 10 medical oncologists in nine hospitals. Their first two consultations were audio taped, transcribed, translated into English and coded. RESULTS: Thirty-two of 78 participants had an interpreter at 49 consultations; 43% of interpreters were family, 35% professional, 18% both a professional and family, and 4% a health professional. Sixty-five percent of professional interpretations were equivalent to the original speech versus 50% for family interpreters (P= .02). Seventy percent of nonequivalent interpretations were inconsequential or positive; however, 10% could result in misunderstanding, in 5% the tone was more authoritarian than originally intended, and in 3% more certainty was conveyed. There were no significant differences in interpreter type for equivalency of interpretations. CONCLUSION: Nonequivalent interpretation is common, and not always innocuous. Our study suggests that there may remain a role for family or telephone versus face-to-face professional interpreters. PRACTICE IMPLICATIONS: careful communication between oncologists and interpreters is required to ensure optimal communication with the patient.

Grappling with cultural differences; communication between oncologists and immigrant cancer patients with and without interpreters.

OBJECTIVE: Immigrants report challenges communicating with their health team. This study compared oncology consultations of immigrants with and without interpreters vs Anglo-Australian patients. METHODS: Patients with newly diagnosed incurable cancer who had immigrated from Arabic, Chinese or Greek speaking countries or were Anglo-Australian, and family members, were recruited from 10 medical oncologists in 9 hospitals. Two consultations from each patient were audio-taped, transcribed, translated into English and coded. RESULTS: Seventy-eight patients (47 immigrant and 31 Anglo-Australian) and 115 family members (77 immigrant and 38 Anglo Australian) participated in 141 audio-taped consultations. Doctors spoke less to immigrants with interpreters than to Anglo-Australians (1443 vs. 2246 words, p=0.0001), spent proportionally less time on cancer related issues (p=0.005) and summarising and informing (p≤0.003) and more time on other medical issues (p=0.0008) and directly advising (p=0.0008). Immigrants with interpreters gave more high intensity cues (10.4 vs 7.4). Twenty percent of cues were not interpreted. Doctors tended to delay responses to or ignore more immigrant than Anglo-Australian cues (13% vs 5%, p=0.06). CONCLUSIONS: Immigrant cancer patients with interpreters experience different interactions with their doctors than Anglo-Australians, which may compromise their well-being and decisions. PRACTICE IMPLICATIONS: Guidelines and proven training programmes are needed to improve communication with immigrant patients, particularly those with interpreters.