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

OBJECTIVE: To review which domains somatically ill persons nominate as constituting their QoL. Specific objective is to examine whether the method of enquiry affect these domains. METHODS: We conducted two literature searches in the databases PubMed/Medline, CINAHL and Psychinfo for qualitative studies examining patients' self-defined QoL domains using (1) SEIQoL and (2) study-specific questions. For each database, two researchers independently assessed the eligibility of the retrieved abstracts and three researchers subsequently classified all QoL domains. RESULTS: Thirty-six eligible papers were identified: 27 studies using the SEIQoL, and nine presenting data derived from study-specific questions. The influence of the method of enquiry on patients' self-nominated QoL domains appears limited: most domains were presented in both types of studies, albeit with different frequencies. CONCLUSIONS: This review provides a comprehensive overview of somatically ill persons' self-nominated QoL domains. However, limitations inherent to reviewing qualitative studies (e.g., the varying level of abstraction of patients' self-defined QoL domains), limitations of the included studies and limitations inherent to the review process, hinder cross-study comparisons. Therefore, we provide guidelines to address shortcomings of qualitative reports amenable to improvement and to stimulate further improvement of conducting and reporting qualitative research aimed at exploring respondents' self-nominated QoL domains

Long-term effect in ADL after an interdisciplinary rehabilitation programme for WAD patients: a mixed-method study for deeper understanding of participants’ programme experiences

Purpose: To evaluate long-term effects in self-perceived occupational performance and satisfaction in Activities of Daily Living (ADL)for patients with Whiplash Associated Disorders (WAD) with chronic pain in an interdisciplinary rehabilitation programme, and investigate patients' opinions of programme effects. Method: A mixed-method with sequential explanatory design was used. Fifty-three patients with WAD were followed-up 12 months after discharge. The Canadian Occupational Performance Measure was used to evaluate the change in ADL and the Multidimensional Pain Inventory for psychosocial functioning. Telephone interviews, based on five structured questions about the perceived impact of the rehabilitation programme, were made. Results: The 12-month follow-up showed significant ADL improvement (p<0.001). There was less interference in daily activities due to pain (p<0.01), and life control increased. More people were back to work. Interviews revealed the programme's environment as strengthening and safe, and participants felt they were met with respect. Key success factors were to be treated with respect to being part of the social context and to obtain new knowledge. Conclusions: The interdisciplinary rehabilitation programme had initiated a process of change towards a more active life for the participants. They had found a new way of managing their lives. Despite the absence of pain reduction, they managed ADL in a better way, had more life control and returned to work to a higher degree

Investigation of stressful life events in patients with systemic sclerosis*

Objective: To assess the occurrence of stressful life events in the year before the initiation of systemic sclerosis. Methods: A consecutive series of 40 patients with systemic sclerosis (mean age (56.3±11.9) years, mean disease duration (4.3±3.1) years; 32 females and 8 males), including 28 with diffuse cutaneous scleroderma and 12 with limited cutaneous scleroderma, were evaluated. A control group of 40 healthy subjects free of systemic sclerosis also was included. Socioeconomic status was investigated and Paykel’s interview for recent life events (a semi-structured research interview covering 64 life events) was conducted. Results: Patients with systemic sclerosis showed higher percentages of lower education (72.5%) and working class (82.5%), and reported more stressful life events (P<0.05), such as exits (P<0.05), undesirable events (P<0.01), and uncontrolled events (P<0.001), when compared with the control. More events that had an objective negative impact (P<0.001) were also reported in systemic sclerosis patients than in the control. These results are in accordance with a multifactorial model of pathogenesis in systemic sclerosis. Conclusion: We reported a strong relationship between stressful life events and the initiation of systemic sclerosis. Our findings are consistent with current understanding of the extensive links of behavioral responses to stress with neurophysiological and biochemical processes