Symposium 20 Patients' Experiences of Cancer Symptoms (PECS study)

Symposium lead:
John Costello, Lecturer in Nursing, Nursing, Midwifery and Social Work, The University of Manchester, Manchester, United Kingdom John.Costello@manchester.ac.uk

Symposium chair:
Alex Molassiotis: Chair & Professor of Cancer & Supportive Care, School of Nursing, Midwifery & Social Work, University of Manchester, Manchester, UK

Symposia focus:

Although symptoms are a frequent topic in oncology and quality of life literature, the concept of symptom experience has only recently been clarified by the delineation of its two sub components, occurrence and distress (Dodd M et al, 2001; Rhodes et al 2000). Furthermore, our understanding of cancer patients’ experiences is limited and the existing information is insufficient to guide the development of policies or interventions to meet their needs (Ashbury et al 1998). In addition, some studies have looked at the symptom experience from the carers’ perspective and it is clear that the carers experience higher distress levels than the patients (Lobtchuk & Degner 2002; Davies et al, 1996), but again little work has been directed to the carers.

The symposium will bring together recent empirical longitudinal qualitative and quantitative data of a large cohort of cancer patients, it will examine the symptom experience from both the patient and carer perspective, will demonstrate the changing nature of the symptom burden at different points of the illness trajectory, and will highlight differences and similarities between qualitative and quantitative data sets. Hence the symposium will provide opportunities to better understand the meaning of symptom experience from both patient and carer perspectives, how that experience affects their lives, how patients and carers utilise self management techniques to overcome such experience, and how health professionals enhance with this information the management of symptoms.

Learning outcomes:

At the end of the symposium participants will be able to:

  • Better understand the concept of cancer symptom experience from the parspectives of both patients and carers
  • Discuss how symptoms over different phases of the illness trajectory affect patients and their carers
  • Discuss implications for the development of symptom management strategies

References:

  • Ashbury FD, Findlay H, Reynolds B, McKerracher K (1998). A Canadian survey of cancer patients’ experiences: are their needs being met? Journal of Pain & Symptom Management, 16: 298-306
  • Davies E, Clarke C, Hopkins A (1996). Malignant cerebral glioma-II: Perspectives of patients and relatives on the value of radiotherapy. British Medical Journal, 313: 1512-1516. Dodd M, Janson S, Facione N, Faucett J, Froelicher ES, et al. (2001). Advancing the science of symptom management. Journal of Advanced Nursing, 33: 668-676
  • Lobchuk MM, Degner LF (2002). Symptom experiences: perceptual accuracy between advanced-stage cancer patients and family caregivers in the home care setting. Journal of Clinical Oncology, 16: 3495-3507
  • Rhodes VA, McDaniel RW, Homan SS, Johnson M, Madsen R. (2000). An instrument to measure symptom experience: symptom occurrence and symptom distress. Cancer Nursing, 23: 49-54

Source of Funding: Christie Hospital NHS trust

Level of Funding: N/A

Abstract 1: Symptom experience in cancer patients through longitudinal qualitative interviews

Wilson B. Research associate, School of Nursing, Midwifery and Social Work, University of Manchester UK

Using longitudinal interview data gathered at four time points in the year following a cancer diagnosis, this study explores how a large cohort of cancer patients describe and subjectively perceive the utility of employed coping styles. Possible changes in such styles over time are described and responses to perceived failing strategies explored. Patients evaluate and respond to symptoms based on their ascribed meaning. Patients evaluate meaning based on the cause, severity, treatability and effect on life, and consequently utilize a range of emotion and problem – focused coping strategies in response. While health professionals may consider the use of certain strategies as indicative of maladaptive coping, and seek to intervene to promote a more adaptive response to speed physical and psychological recovery, patients themselves may evaluate their strategy(ies) positively and adaptively in light of the meaning they attached to symptoms. Intervention in such instances may prove an inappropriate use of scarce resources and counter productive to patient well-being. Given the dynamic nature of the symptom experience within a patients’ cancer trajectory however, previously perceived beneficial strategies may prove inadequate over time, and, without modification, give rise to distress. Recognising indicators suggesting the inadequacy of such strategies is important in developing timely interventions.

Abstract 2: Transitions of symptom experience and symptom clustering: lessons for symptom management

Molassiotis A.Professor of Cancer & Supportive Care School of Nursing, Midwifery and Social Work, University of Manchester

In this study, 98 patients from eight diagnostic groups and their caregivers completed the Memorial Symptom Assessment Scale (MSAS). This scale evaluates 32 physical and psychological symptoms and these comprise 3 subscales, including the psychological symptom subscale, the high prevalence physical symptom subscale and the low prevalence physical symptom subscale. The scale was completed shortly after diagnosis, 3 months, 6 months and 12 months post-diagnosis.

The data shows that the hierarchy of symptoms differs along the illness trajectory, with physical symptoms being more burdensome in the early assessments, while later on psychological symptoms become more prominent. A large number of symptoms were present concurrently, and were strongly linked with certain other symptoms, forming symptom clusters (ie. fatigue, sleep and depressed mood). Such symptom clusters should be the priority of symptom management interventions, moving away from treating single symptoms only.

Abstract 3: Caregivers experience of the patients symptoms

Costello J. Lecturer, School of Nursing, Midwifery and Social Work, University of Manchester UK

This study supplements the primary research by exploring the caregiver’s perspective. The aim was to explore caregiver perceptions of the patient’s cancer symptoms experienced during different phases of their illness. A cross sectional purposive sample of 57 adult carers from Breast, Gynaecological, Prostate, Brain, Lung, Lymphoma, Head and Neck and Gastrointestinal disease sub groups were used. The study strengthens the quantitative study by enabling the caregiver to provide information about their perceptions of the patient’s symptoms. In depth interviewing was the primary data collection method using face to face interviews over a one year period at approximately 4, 11, 25 and 50 weeks post diagnosis. The transcribed interview data was analyzed using N'vivo. Carers often experience distress as a result of feeling disengaged from the communication processes initiated by Health Care Professionals (HCPs).

As a result many carers express feelings of isolation and distress. Carer distress also results from their perceptions of the patients symptoms, some of which for example alopecia and fatigue have an adverse, although these symptoms may not be significant to the patient. The discrepancy between overt symptoms observed by the carer and the covert concerns of the patient can lead to inappropriate interventions by HCPs. Patients experience a wide range of physical and psychological symptoms during their illness. There is evidence of patients ‘masking’ the impact of their symptoms as a protective strategy to help carers cope more effectively. Patient management of symptoms are attenuated by a desire to reduce carer distress. This symbiosis changes according to the extent to which carers respond to the patients symptoms.

Abstract 4: Methodological conflicts in the assessment of symptoms: qualitative versus quantitative data

Molassiotis A.Chair & Professor of Cancer & Supportive Care, School of Nursing, Midwifery and Social Work, University of Manchester UK

Quantitative and qualitative assessments of symptoms carried out in the sample of a heterogeneous group of cancer patients were shown to differ between each other. While patients reported a large number of symptoms (quantitative data), they focused during the in-depth interviews in a small range of symptoms which affected their lives the most or triggered other difficult situations. The understanding of meaning of symptoms was important in shaping the patients’ response and coping with the symptoms. Furthermore, this paper will discuss the difficulties of utilising longitudinal interview techniques over prolonged periods of time, and ways of handling such data sets. The role of both qualitative and quantitative data in symptom assessment will be highlighted.