Introduction: The phenomenological perspective of Quality of Life (QoL) acknowledges the dynamic nature of QoL and separates it from any external definition of health. QoL is a very difficult outcome to measure adequately and scientifically, yet it is an important outcome to measure in a Cancer/Palliative Care population.
Objectives: This exploratory review of published research debates the philosophical aspects of QoL measurement and the extent to which this ‘science’ has evolved to place the ‘patient’ at the core, intricately shifting and evolving with the dynamic nature of the human spirit, while maintaining scientific validation.
Methods: Analysis of studies using a subjective measure of QoL, ‘The Schedule for the Evaluation of Quality of Life’ (SEIQoL), ‘SEIQoL-Direct-Weighting’ (SEIQoL-DW) and measuring ‘Adaptation/Response Shift’ (RS) are analysed. The relationship between patient perception of QoL, symptoms, ‘symptom bother’ (SB) and the ‘symptom bother interference in QoL’ (SBIQoL) are extrapolated in the clinical context.
Results: SEIQoL, SEIQoL-DW, using a modified SEIQoL-DW interview to assess SB, SBIQoL were all acceptable/valid as outcome measures for Cancer/Palliative Care patients. When RS was incorporated, results were illuminating with an improvement in QoL even in the face of impending mortality. Using QoL/Symptom outcome information as an actual ‘Clinical Tool’, in a controlled clinical cancer trial, yielded highly significant positive results.
Conclusion: Even in the face of mortality, physical deterioration appears to become relatively less important and intrapsychic factors relatively more important, with high scientific validation. For cancer trials, future studies on individualised QoL, incorporating SB, SBIQoL and RS could lead us closer to understanding the innate potential of the human spirit to adapt and cope even in the face of adversity. Use of QoL, SB, SBIQoL and RS information as a ‘clinical tool’ has been shown to improve patient’s SBIQoL and could have a role in the future to evaluate effectiveness of service delivery.
Keywords: Quality of Life (QoL), Symptom bother, Symptom interference in QoL, Response Shift