Untitled

Abstract

Although the subjective nature of quality of life is generally accepted, less attention has been paid to the procedure of selecting domains to be explored with questionnaires. To explore what contributes to cancer patients' quality of life, a survey was conducted with the aim of identifying contents of quality of life using cancer patients as 'experts'. A questionnaire with open-ended items aimed at exploring the meaning of quality of life and at determining the contents of health and not health related quality of life, was submitted to a sample of cancer patients stratified by residence, cancer site and stage of disease. The 248 questionnaires received were transcribed and broken down into phrases to allow coding. A content analysis was performed, using as a conceptual framework, the domains identified by the Italian Society of Psycho-Oncology. Overall, 43 domains and a list of symptoms were identified. The two most frequently reported symptoms were pain (21.4% patients) and fatigue (14.1% patients). Social relationships and psychological domains were heavily represented. Twenty sub-domains related to the domain 'psychological well-being'. This study suggests that information on the content of quality of life questionnaires to be submitted to people affected by a specific disease, should be derived by studying people suffering the specific disease. These results reinforce the criticism that available quality of life instruments are more likely to reflect the perspective of health professionals than patients.

Somatically ill persons’ self-nominated quality of life domains: review of the literature and guidelines for future studies

“…Half of the included studies were conducted among patients with cancer [15, 16, 18, 19, 21, 22, 24, 28, 34, 35, 41, 44, 47, 50–52, 55, 56], whereas the other studies included patients with a range of other somatic illnesses (see Table 3). In three studies, the patient sample consisted of a combination of both patients with cancer and patients with another somatic illness [38, 39, 45].…”

“…In the remaining studies, QoL domains were identified by means of a telephone interview [53], focus groups [47], or a questionnaire employing open-ended questions [43, 46, 52]. …”

“…This meant that in 12 papers [8, 16, 18, 22, 38, 46–52, 56] we ignored the overarching themes that authors used to group the self-nominated QoL domains. For example, Cohen and Leis [51] classified the QoL domains ‘physical condition’, ‘physical functioning’, ‘psychological state’ and ‘cognitive functioning’ into the overarching theme ‘own state’.…”

Patients’ and Health Care Providers’ Evaluation of Quality of Life Issues in Advanced Cancer Using Functional Assessment of Chronic Illness Therapy - Palliative Care Module (FACIT-Pal) Scale

“…It is generally accepted that the patients’ perspective is the gold standard for the measurement of health related quality of life and as a result, they should be the primary source regarding what issues are to be included in a health related quality of life (HRQOL) assessment tool [ 4 ]. Patients are best able to define and measure their own HRQOL because it is such a subjective experience [ 5 ].…”

Health Care Professionals’ Evaluation of Quality of Life Issues in Patients With Brain Metastases

“…When it comes to content in QOL assessment tools, it is generally accepted that the patient perspective is the gold standard [ 22 ]. Since patient experiences can be subjective, one’s definition and measure of issues can differ starkly from another.…”